Slowly Improving

This one is the one he chose!

08.12.17

Normally the four hourly rescue inhaler see's us through a flare until we wean off it making sure the asthma is still under control.

This flare, as mild as it has been compared with previous ones has also been the most unpredicatable.  Just when we deemed it okay to stretch the inhaler from four hours to six hours, Charlie had a relapse and presented with troubling symptoms again.  This has happened twice during this flare.

AND THEN CAME THE SNOW!

Charlie has never been out in snow  The last time is snowed good and proper was when I was expecting him!  He was so excited this morning but his asthma was on edge and I had to disappoint him and make him watch it from the window.

We have stayed inside and kept warm but when he left the room to go to the toilet, the temperature change upstairs hit him like a ton of bricks and he needed rescue salbutamol two hours after his four previous puffs.  A top up INSIDE THE HOUSE!

We had no choice to go outside eventually for milk, catfood and medicine for my older son (different story altogether) so I told him about the importance of breathing in warm air and what cold air would do to his lungs.  We waited until it had warmed up a bit outside and did most of the journey in the car.

I gave him the choice of two face coverings and told him about Asthma UK's #scarfie campaign and why it was "so cool" and would help to keep him safe.  He decided in a split second which "look"  he would sport and as you would probably guess, I walked around our village with Spiderman.....(who incidently didn't need any of his inhaler the entire time we were out xxx)

Charlie's SCARFIE  #asthmauk  - this is not the look he went with though....

Right to be on edge

06.12.17

Yesterday Charlie's school rang me to say that he hadn't eaten his lunch.  When the dinner ladies asked him to eat his sandwich, he put it on the floor!  I responded by saying it was not like him to behave that way and that I would talk to him, I also reassured them that he wouldn't starve and then as an after thought, I asked them to keep an eye on him as he sometimes loses his appetite before his asthma flares.  They reassured me that all was well in the asthma department, they thought he just wanted to go out to play and didn't want to waste his time eating.

I picked him up at home time and he is pale.  He is still sniffing but he is fine within himself.  We get home and I do him some dinner, which he refuses to eat.  Two meals uneaten.  Panic rises inside me.  He seems to be catching his breath. He has a sore throat, a slight cough and is sneezing.  I get his rescue inhaler and he flatly refuses it saying he doesnt need it.  I go into overprotective mode, he only ever refuses his inhaler when he really needs it, presumably because his chest is tight and the mask over his face is not a nice sensation when he is working hard to breathe.  I explain that I feel his asthma is flaring up and his blue buddy would keep him safe, he takes four puffs.

He calms down.  He has some milk and says he is tired.  His breathing rate rises up to the early thirties per minute.  His range for his age is 20-30 so whilst this was not a red flag, for someone who was resting, it was a little higher than you would expect.  My oxygen sats gadget has ran out of batteries, we haven't used it in so long, I hadn't even realised and have no spares.

Charlie falls asleep and then I hear it.  He is breathing through his nose and I reason it could be conjestion; he can be a little snorer at times.  Over the top of each exhale is a very slight, hardly noticeable whistle that tails off as the breath ends.  Every time.  I change his position but still hear it, even when he starts snoring, I can still hear it.  My husband says it is his nose conjested but my gut feels like it is tearing, I think it is a wheeze.  I think Charlie is wheezing.

I sleep on and off next to him downstairs for nearly two hours and then we all go to bed.  We set the alarm for another two hours to give him more ventolin.  It goes off and I check on him and sure enough, the whistle is there, a little more shrill this time.  He is wheezing, ever so quietly wheezing.  However, he is settled and his breathing rate is absolutely normal.  I give him more of his inhaler and set my alarm for another two and then four hours.  I have to check on him regularly.

I kept him off school today.  I was on edge for a reason, I knew this flare was coming.  I saw it in his face.  I told my Dad that I could see it two days ago.  Charlie has been really strong, really well but something, as much as I wanted to believe he was okay, was niggling me.  We saw the Doctor and she sounded his chest.  It was "lovely and clear" and "all credit to (you) as parents for reacting and keeping the resuce inhaler going."

What credit?  I don't feel like taking any.  I react in fear.  I know I sound like we have a lot of experience in this, I know I seem to have a bit of knowledge where Charlie is concerned but the truth is, I haven't got a clue if I am doing this right.  I am just hell bent on keeping him safe and if that means pumping him with salbutamol every four hours, I will, even though I know this is not a preventer medication, it is meant for rescue.

Then I got angry - why am I being allowed to "control" his attacks this way?  Why is he still getting regular flare ups at all?  Clearly his preventer medication is not doing the job it is supposed to do.  Of course it is offering him some protection but it isn't strong enough.  I ring the hospital demanding to know where his three month review is - it was due in November.  I am told Charlie's consultant has indeed left but he will be put under a locum which currently means a 17 week waiting list.  I said absolutely fine but when did the seventeen weeks start?  When did his name get flagged so I can work out when he will be seen and the lady on the phone couldn't (wouldn't) tell me.

I took her through a few of Charlie's recent events.  She put me on hold, came back on the line and said she was confident that we would get a letter in the next week-ten days.  If I didn't, she strongly advised me to go to my GP to get an urgent referral letter (to effectively jump the queue)  I won't be getting a referral letter, Charlie is my world and one of the most important things I will ever hold close, however, I am not jumping ahead of another child with asthma.  It has been more than seventeen weeks since he was seen so they can just damn well type the letter.

I have decided that when I go to the new consultants' office, I will have Charlie's Doctors notes from all the appointments he has had, all the stuff he has been prescribed and their recommendations.  I will also have his absences from school.  I want his preventer medicine reassessed.  I know we can control his asthma using frequent rescue medication but I don't want to do that.  I don't want to interrupt him at school, I don't want him off school for any more days than he has to.  I don't want to watch him guess the words to his Christmas songs because he doesn't know them, looking lost on stage.  I don't want to hear him say no one plays with him because he isn't there to make firm friends.  I don't want him to put his sandwiches on the floor because his asthma takes away his appetite.

I want him to be asthma free as much as we can physically get him. 

Enough is enough now.

More Worry

04.12.17

I shouldn't leave it so long inbetween blogs because when it comes to it, I don't know where to start.  This week, the last couple of days in particular have been stressful, not because of Charlie though - he is very strong at the moment, long may it continue - but my eldest brother.  I am not sure really whether he would want me blogging about his weekend but to cut a long story short, he went to the Doctor last week with a very tight chest and was prescribed prednisolone and a preventer inhaler.  He was told he is probably an asthmatic and was encouraged to do peak flow readings everyday.  Mum said he should be producing readings of about 600 but is only managing around 350.

I have been saying for over a year to my brother to go to the Doctors as he seems to have asthmatic tendancies.  He does have some allergies and does quite often get a tight chest but then works in dusty environments and his chest always corrects itself.  He doesn't bother the Doctor, if he had been every time his chest was bad, he would have been diagnosed with asthma by now.  There is a possibilty of course that he has just breathed in a load of dust and dirt particles, assaulted his lungs and picked up a bad chest infection which seems likely as he is now coughing up nasty stuff.

Either way, I was surprised (not that I am medically trained) that the Doctor didn't prescribed a rescue inhaler for my brother.  He has been very poorly over the weekend, his peak flow readings have been very poor and my mum has been extremely anxious.  I have seen her gathering information on asthma for my brother to read, calling and texting him for progress updates, visiting him, buying him masks to wear for when he is working and recording his peak flow results.  I have seen my mum act manically just the way I act around Charlie's asthma.  I have seen her worry and anxiety and my heart has ached for her.

In a way, I think my mum has more to worry about.  Adults brush off their asthma, my brother even told me not to worry as it "takes more than this to bring me down."  I gave him a spare salbutamol (ventolin) inhaler which he has had to use.  I have text him every four hours reminding him to top up his dose and keep his ariways open.  When he told me his chest felt better, I reminded him that it was because he was using his medication to keep his airways open.  He is due back at the Doctors tomorrow hopefully to get anti biotics (if needed) and his own rescue inhaler.

The amount of wisdom I have been able to pass on to my brother because of Charlie's journey so far has hopefully had a positive effect and quite surprised me.  My mum knows her stuff, she is a retired respiratory nurse so between us, my brother should get sorted out with the help of his Doctor.

As for Charlie, he has been off his ventolin for over a week now but I had to give him some tonight due to him constantly sniffing.  He told me he had a cold but said he wasn't sneezing or coughing so it couldn't be!  I told him it could be his asthma and he told me it wasn't but I gave four puffs of his rescue anyway.  He has no other symptoms at the moment, but Charlie's asthma builds up over three or four days so I want to be safe rather than sorry.

Charlie is upset that his Uncle has asthma as well but has been a fountain of knowledge!  He wants to know what colour inhalers his Uncle has and has been telling me to send messages telling his Uncle when he needs to take his blue buddy (that's what Charlie calls his inhalers, his buddies!)  I think my brother will come round at some point and I am hoping he will make a pact with Charlie to always take his preventer inhaler as prescribed.  That is probably the best start you can have in treating asthma.

The other slight drama we have had (other than me having to sew together a sheeps costume for Charlie's nativity) was the inhaler bag Charlie wears during lunch on the playground has fallen a part.  I have fixed it, it took a while and I have managed to stab every finger with the needle but its done!  We still don't have a consultants appointment through so I will be chasing the hospital again this week.

Just as an add on - this time last year, Charlie had just come home from hospital after his worst attack.  This time last year he had been in and out of hospital and was a poorly lad.  He is stronger, he is winning and he is going to show his Uncle how you manage asthma and how you stay safe (with Mummy standing guard the enitre time!).

Re-Visiting

20.11.17

Well, my eldest son, Thomas, our own computer genius thought I had made it in the world of Twitter this week when Mark, an asthma blogger and severe asthmatic himself contacted me about my blog.  I follow Mark on Twitter @blogasthma because he posts and shares so much information about the condition that I have found to be so useful and thought provoking, plus his own blogs (www.asthmablog1971.com) are so interesting to read.  Mark wanted to share my blog to his followers.

I felt a little uncertain at first, although flattered to get some positive feedback about my blog.  I started it initially as a way of reaching out across a large audience to try and get some information on asthma and various treatment routes that could help Charlie.  To be honest, not much has come to me through the blog so it then became a way of documenting Charlie's asthma (which helps no end in Consultant appointments) and a way for me to vent my feelings.

I wasn't sure about having it shared further at first which sounds ridiculous as I have put it out there on the internet in the first place!  I think I was nervous maybe about seeing actual people follow the blog and give feedback as it has become a very personal thing to me.  On the website I just see a counter that tells me how many visitors the blog has had, no faces or comments just a little number that goes up every so often!

My son said it was a real compliment for someone to pick up the blog and want to share it.  I agreed for the simple reason that I still think somewhere, someone knows something that I don't and that something could change the course of this journey for my little boy.  Not that I knew exactly how it would look or which bits would be shared.  I have managed to read all the bits Mark has shared tonight and it has made me smile and made me cry. 

The earlier blogs I have almost forgotten writing, though the content is still in my mind, the timeline gets blurred because asthma does that, it moves time on very quickly and then makes it stand still somehow.  Eventually you lose track as everything merges together, its hard enough digesting the most difficult times when asthma has taken Charlie to his limits without remembering every tiny detail of each attack.

Reading the blogs from back then was like watching myself have the slow realisation that these "episodes" of breathing difficulities my tiny boy was having was actually because there was something wrong, his body wasn't behaving the way it should and that this condition, though still without a formal diagnosis could stay with him for a while, if not forever.  A condition that lurks behind us in its monster form always ready to threaten but never willing to give much notice.

My work colleague and I have been discussing work issues tonight (going off subject for a moment, it will swing back I promise!) and she said to me that I am very "outspoken, in a good way," and she wished she could be more like that.  The thing is,  I have never been assertive.  I am the quiet helpful one, the peace maker, the invisible one who gets things done to help others.  The first time I ever felt assertive was when I became a Mother but only then did I speak out when I needed to. 

This outspoken version of myself was born when Charlie got sick, not straight away, not at the time that I waited for the Doctors to give me answers but at the time when I realised they simply can't and whilst I am grateful to have the medical professionals on our side, it would be me and the rest of the asthma community who I connect with more and more everyday that would ask the questions, try the suggestions and quietly document the results amongst themselves in their support groups, their blogs - in their sharing.

I had a complete wobble last week, feeling very low, tired and scared.  Charlie's asthma is twitchy, he has a bit of a cough and has been looking a bit pale of late but what we have learned so far is (touch wood) working right now.  I feel a bit stronger again.  I can see a bigger opportunity to get more information, to get more help, to keep him safe.

Thank you Mark x

 

 

Nightmares

15.11.17

Charlie has been battling a bit of a cold for a while now, it never seems to end for him but we have persevered with the maintenance dose of his rescue inhaler as suggested by our GP, adjusting the dose according to the severity of his symptoms and it seems to have kept everything under control, with the exception of my anxiety.

I am having a lot of trouble sleeping soundly at the moment, night shifts aside and am feeling incredibly sensitive.  I don't usually take my work home with me but recently some situations have upset me and I am thinking about them a lot away from the work place.  I am also reading the most upsetting posts on the Asthma support group that I am part of, posts where parents are bravely informing us of their childs death caused by asthma and I can't begin to imagine the pain of experiencing that.

I always take Charlie to bed now and read some books before giving him a little cuddle when the lights go out and tucking him up.  The other night I fell asleep next to him and had all sorts of bizarre dreams that I can't really recall but I know that they disturbed my sleep greatly.  The recurring dream is that I wake up really disorientated and frightened, if I am thinking of Charlie's asthma, which I do a lot, I have this feeling that I have forgotten something or need to find something important but I don't know what it is.  I lie there with this blank space in my head trying desperatly to find the answer and then manage to convince myself that something really is off to the point that I have checked and double checked all his notes and prescriptions - it is just a dream.

I woke up next to Charlie after having some of these dreams and I looked over at him.  He was lying on his back and his skin looked pale in the half light and his lips looked a blue-ish colour to me.  I realised how still he was and looked at his chest to see it rise and fall but it stayed motionless.  I called his name and then sat up, held his shoulders and gave him a little shake whilst saying his name again.  He took a sudden deep breath in and I started crying.  I was frightened to leave him but felt disorientated, I wasn't entirely sure if I had had a nightmare, imagining the worst as I was coming round from a sleep.

I checked him a further twice over the next hour and lay on my bed for a long time straining my ears to hear his noisy little snore! - until sleep overtook me.  What a terrible nightmare.  I dreamt my precious boy close to death, so still and cold - my worst fear.  Then to think that there are parents where this has been their reality chills me to the core.

At this point, I don't know if I am just on edge and over tired or whether I need to get help!  I need to chase Charlie's consultants appointment, his flu vaccine is on Thursday (anxiety is through the roof on that one) and I am exhausted from keep pushing these fears aside. The thing is, I do feel like we are in control of Charlie's asthma; maybe that is what is concerning me so much.  Asthma is so unpredicatable, maybe my instincts are warning me, maybe I am expecting something because it does come back, out of the blue.

Its all if's and maybe's.

I can but hope it stays in my nightmares and leaves my little man alone.

From Scratch!

06.11.17

Before I start this post, I do need to say that I don't offer any part of our experience with asthma as direct advice.  We are on a journey; it turns out of discovery and whilst I sometimes get very exciting about things I read or research, it doesn't mean these things will work wonders.  Just because I am willing to try, doesn't mean I expect others to as well!  Everyone's jounrey is different, I think research and safety are the most important things and I would never do anything or try anything that had a risk of harm to my child.

After blogging in the early hours of this morning about dairy, I decided to use my next break at work to research some of the nutritional benefits, specifically connect to alleviating symptoms of asthma of the foods that Charlie already loves to eat.  (By the way, milk contains magnesium which is marvellous for its bronchodialating and anti inflammatory effects, so more reason for Charlie to guzzle his favourite drink down!)

It turns out that my little boys body must know exactly what it needs and what it is doing.  ALL of the fruits, vegetables and foods he loves have benefits for reducing symptoms of asthma due to containing anti-oxidants, having anti-inflammatory properties, containing elements that act as broncodialators and having immune boosting properties.

Our bodies are so clever!  What has shocked me is that processed foods, even the healthier options (I am thinking salmon fish fingers etc) are shockingly bad for you.  For example, I have read that 100g of baked cod contains 1.2g of fat, while the same weight of cod fish finger contains around 8.5g!  Those fats are dreadful for most health conditions, including asthma.

Tonight Charlie had a "picnic plate" - a plate full of different raw foods such as fruits, veggies etc -something we invented together and a firm favourtie of his!  On his plate tonight were carrot sticks, cucumber sticks, apple, ham and chesse on wholemeal toast (made with a flaxseed based margerine which I added raw chopped garlic.)  A part from the ham (processed food) that was a really healthy plate of grub for him and he cleared it following it up with a bowl of water melon.  I didn't purposely serve him water melon, it was in the reduced section at the shop but out of interest I did google the health benefits and it turns out to be an awesome fruit for asthmatics to be eating.

Anyway, I know that I can not magically cure my little boy through diet alone but I am now obsessed with improving all of our diets.  We did make changes before - Charlie eats all kind of berries because of the previous research I did into nutrition and I have no doubt these have been very healthy for him.  He also drinks pro biotic drinks and has a daily multi vitamin, however, I feel like these changes are the tip of the iceberg for us and to be honest, the rest of the family should be eating healthily as well.

Tonight I made my own spaghetti bolognese from scratch - garlic, red onions, yellow peppers, cherry tomatoes, chilli, parsnip, carrots and low fat mince.  It was delicious!  So that's the new rule - everything from scratch.  No processed foods if we can manage.  As a family on a budget who eats off the same meal planner week in, week out, I don't expect this to be financially easy for us but I would sell my soul to the Devil to take Charlie's asthma away from him so I will work it out.  

Tomorrow we have decided that Charlie is going to have scrambled egg on seeded batch toast with his plant based margerine with avocado chunks and carrot sticks.  Its fruit again for pudding and maybe yoghurt.  The rest of us are going to try a home made curry.  Gone are the jars full of salt and sugar - we are going to eat to reduce the free radicals floating around our bodies because thoese things are going to hurt us.  I can't personally stop Cho's asthma but I can do everything as his Mummy to help his body figure it out.  Today we start from scratch.

Dairy

06.11.17

There has been a lot of discussion on the facebook asthma support group that I joined about cutting dairy out of the diet to improve asthma symptoms.  I am very interested in nutrition and the bednfits of eating certain foods relating to certain ailments and conditions.  When Charlie was first having problems and the Doctors were leaning towards asthma, a very good friend of mine who is very much into holistic therapies told me to cut milk out of his diet and dairy, she told me it causes mucous build up and is very bad for asthmatics.

As much as I love and respect my friend, I had and still havent ever connected dairy with Charlie's respiratory problems.  He loves milk, he loves yoghurt, he loves dunking bread sticks in soft cheese, cutting dairy out of his diet would be like starving the little fella.  However, it came up again today on the asthma support group so I felt the need to do some basic reading on the theory and so to googling.  Immediately there were articles to support this idea and articles debunking it.  I read some of each and have decided to stop considering the idea as a plausible option to assist "curing" Charlie's asthma (as if it would ever be that simple anyway!)

An Australian study that I read put it quite simply.  Asthma can be triggered by allergies.  In order for dairy to trigger an asthma attack, the person would have to be ALLERGIC (not intolerant- allergic) to dairy.  About 5% of asthmatics may be allergic to dairy and these are the people who should be cutting it out of their diets and looking at alternatives.  For the rest of sufferers (specifically regarding asthma) dairy is a very important source of calcium, especially in children.

Charlie has been allergy tested and has luckily shown negative for those he was tested for.  Charlie is viral induced so the only thing I should be revisiting is how his diet can proactively support his immune system to quicken its response to viruses and reduce the time that his lungs are twitchy because of him feeling poorly.  As for dairy, Charlie is going to continue to have it in his diet.

I think the biggest connection to asthma attacks with dairy appears to be the production of mucous.  People in general tend to think that drinking milk causes the production of extra mucous.  This is actually not true.  Drinking milk thickens saliva, a completely different thing that can often be mistaken as mucous production but in actual fact would not trigger an asthma attack in a non-allergic person.  Drinking cold milk would possibly tip Charlie into an attack becuase of breathing in cold air,  if he already had a virus on board but we already knew this from when he had an attack following eating an ice cream so now we warm his milk up to try and avoid the cold temperatures creating a spasm in his upper respiratory area.

Asthma is usually caused by an inhaled trigger, not a digested one.  Unless the person is allergic to a particularl thing, it is unlikely to cause an attack.  This is my understanding from reading a lot of things on google today, not that I am an expert.  As always I would advocate anyone suffering from asthma to take their preventer inhaler as prescribed and carry their rescue inhaler with them at all times.  I would also say that everyone is individual so if a parent felt their child was reacting to dairy, absolutely seek advise, get tested for allergies and act accordingly, afterall we all know our children better than anyone else.

As for cutting it out of a childs diet prior to getting tested or seeking advise from a GP, I just wouldn't.  Children are constatnly growing and calcium is so important for healthy bones.  I am happy that dairy does not affect Charlie's asthma, if I thought that it did we would be drinking soy milk and living on fruit but I am confident we can rule this theory out for him.  Just looking into it has made me realise that we do need to re-check our diets and eating habits as we may be missing a trick and this is what I will be doing over the next couple of weeks (as soon as the Halloween sweets have disappeared at any rate!)

 

UPDATE

30.10.17

We have been in Cornwall over the half term holiday with my Mum, Dad and older brother.  We have had a lovely week visiting places like Boscastle, Tintagel and St Minver but I have found it a little harder to relax this year.  On Thursday 19th October, the day before we left, Charlie and I were back at the Doctors because he had a sudden exaccerbation.  He had been battling the same cold all week and was still on his four puffs of ventolin every four to six hours.  He had gone half an hour over the four hour mark but seemed perfectly happy as we went into our local supermarket to get bread and milk.  We got back in the car when he went pale, started coughing and told me his breathing was bad, this whilst I was driving home.

Luckily we only live around the corner from the shops so as soon as I carried him inside, I gave him six puffs of ventolin which relieved him and phoned the Doctor.  Doctor Gopal saw him at 5.20pm and sounded his chest.  There was no wheeze, probably down to the six puffs of rescue I had not long adminisited but Doctor Gopal said I had described an attack and whilst antibiotics were not needed he prescribed a course of prednisolone for us to take with us on holiday should the rescue inhaler not control the attack.

Doctor Gopal said that Charlie needed four hourly four puffs of his rescue inhaler but if at any point he needed more before the four hours were up or I had to increase it to six puffs and beyond, he would need medical advice and at that point, particuarly if we were on holiday, we should start the prednisolone.  Charlie didn't go to school on Friday, I am not sure if he could have really.  He has been going on maintenance doses but this episode happened very quickly again and although I can not rate the support Charlie's school have given me enough, there was a doubt in my mind that they would recognise it quick enough to treat him effectively.  I selfishly didn't want to be in hospital when we should have been driving to Cornwall.

That said, the drive to Cornwall was horrendous for Charlie.  His breathing was fine but he was sick four times and felt sick all of the way.  When we got there we found a pharmacy and bought some anti sickness tablets for his age that wouldn't interfere with his asthma and they worked wonders the enitre holiday.  I have to keep myself rational because being sick can also be a sign of an asthma attack in some children so I have been a little bit on edge all week and am actually very happy to be home.  In this way, Charlie's asthma wins because if it were up to me at times, I wouldn't leave his side, we wouldn't go anywhere and asthma could'nt touch us.

Of course the holiday was well worth it as a whole.  We even bought Charlie his first ever wet suit from the surf shop at Polzeath, an amazing beach with a huge surfing community.  Cold is one of Charlie's triggers and although we were all dressed appropriately to spend a couple of hours on the beach, Charlie un-did any preparation by lying down in one of the pools of water running to the sea.  That wetsuit cost me £20!  It was in the sale thank goodness and the dude in the shop was very helpful.  Charlie was the warmest one on the beach, his asthma stayed very quiet (we had one bout of quick breathing which calmed down after his inhaler) and he thoroughly enjoyed building his sand castles!  My Dad even remarked that we didn't know we even had him with us because he was so occupied!

The children have an inset day today so we are frantically finding kits, bits of uniform and homework sheets that we put "safe" before we went on holiday.  So far so good except Emily's swimming cap has done a runner, which isn't great as she is swimming tomorrow.  Charlie is now off his ventolin but if he so much sniffs today, he will be back on a morning dose before school.  I am waiting for his hospital appointment which should be scheduled for November but as of yet we haven't had a letter.  He gets his flu vaccine at school on the 16th so I am just hoping that he stays well right up until then so he can have it as I want him protected.  We would have had it done already if he had not have been for his asthma flaring up.  I also had a thought this morning that I ought to write the school letters regarding all the absences he has had so far this year and do them a copy of his discharge note so that his records are up to date.

Best get on then x

 

Confused Again

09.10.17

On Wednesday 27th September, I got in from work and waited for Chris to return home from dropping the children off at their friends houses knowing that Charlie was with him.  Charlie had had to have ventolin before going to bed the night before and had had a settled sleep.  However, when Chris pulled up I took on e look at him and decided to call the Doctor to have his chest sounded.  He was chatting but looked pale and was a little quiet sat on the sofa.  I managed to get us an appointment at 10.40am and up until then Charlie had breakfast, drank plenty of milk but was coughing again and sniffing.  He had had ventolin already along with his preventer inhaler but something seemed off and as he wasn't going into school, I needed it on his Doctor's records as I suspected asthma.

We saw Dr Baldock who took his O2 saturations - now bearing in mind Charlie was busy weighing himself, playing with his toys and sitting on her surgery floor chatting, we were both a bit shocked that his sats read as low as 90-91.  She then listened to his chest and told me she could hear crackles on his left side and nothing on his right which was a real worry to her.  She wanted me to take him to hospital immediately, wrote me a letter and sent me before she could even get through on the phone, she would call me if anything changed but I had to move before he dipped.  I don't know why but I had packed a bag which was at my mum and dads house.  We went there to pick it up and dad drove us to the hospital where Charlie is under consultation.

I sat in the back of the car with Charlie and he dipped.  He went as white as a sheet and his O2s on my little gadget read in the mid 80's.  I didn't know how accurate the reading was given that he has very small fingers albeit it very chubby ones!  He leaned heavily into me and I begged him to stay awake.  When we got there the car park was full, dad dropped us off and I carried Charlie to the children's assessment unit, up four flights of stairs (he weighs two and a half stone and I had the hospital bag too)   When we burst into the unit there was just dust and builders, I asked one very urgently where the unit had been moved to and he said he didn't know.  Typical.  I ran back down stairs with Charlie and found a small note on the board saying the unit was temporarily by A&E - the other side of the hospital.  Never in my life have I moved so fast and felt so much pain in my arms but I was getting him to a Doctor.  I too had developed the cough and was spluttering up a lung all the way to the unit.

Charlie was seen quickly and as usual the standard of care at our hospital was immense.  I felt safe because I felt Charlie was safe.  They gave him a treatment straight away and he stayed in until the folowing night time on three hourly then four hourly treatments when we were sent home on a weaning plan and with a very high dose of steroids.  At one point during the stay he was really struggling.  They were checking his obs every hour as his oxygen levels were dropping badly but they kept him in the safe zone and didn't give him oxygen (I felt he needed oxygen but you have to trust the Doctors) We didn't get a bed on the ward because there were no beds, the hospital was so busy and they had to use the assessment unit for inpatients.  I had been awake for 28 hours straight when Chris visited with Thomas and Emily and I was so emotional.

Charlie was asleep at this point and had just had a treatment but it wasn't being effective.  He was working hard for breath and his colour was getting a purple/blue tint.  The other two children looked scared and Chris looked worried so I buzzed the nurse who came and checked his oxygen levels which after a ten puff treatment should have been a lot higher than 91, Charlie didn't have much further to fall before he was in serious trouble and in need of oxygen.  We decided to keep the machine on him to monitor and it was horrible waiting for the ventolin to have some effect.  Then an amazing thing happened.  Charlie loves both his older brother and sister but it is his bond with Emily that makes us all chuckle, he calls her beautiful and says he loves her "100" probably because in his four year old mind this is the biggest number you can love somebody!

Emily had climbed up on the bed to give him a cuddle and was just sat on the end of the bed at this moment looking at him when he opened one eye and clocked her.  He bolted upright, grabbed her and pulled her down next to him for a hug and I am not kidding when I say his oxygen saturations went from 90-91 right up to 95-95 - was that adrenalin?  The relief around his bed, even from the nurse was surreal.  That's what love can do sometimes.  Charlie then gave his brother a hi-five and woke up a lot more to the point we were begging him to calm down so that he didn't crash again!

I believe we were let out of hospital a day earlier than we should have een.  We were sent home when Charlie stretched on ten puffs of ventolin for four hours.  He only stretched twice, I needed one more comfortable run before being sent away.  He was given 30mls of prednisolone to take that day and the following day - more than double his usual dose which said to me they were giving him extra protection because it would see him home safely.  The Registra said I was to use the ventolin only as a rescue medicationand if he ended back in hospital we would look at his preventer medication.  He was a brilliant, friendly and approachable Doctor but I disagreed with himand knew I would go against his advice.

We weaned Charlie over the weekend more slowly than the plan advised and on Monday morning we saw Dr Grocott, the most experienced Doctor I know at our GP practice.  I asked if I could use the ventolin as a maintenance dose to keep Charlie's airways open and therefore keep him out of hospital with attacks and Dr Grocott said absolutely.  He said if the consultants didn't like this, they could ring him.  We don't need to prove that his preventer medication isn't strong enough by risking hospital visits.  It was nice to get that kind of support.  I understand what the consultants were saying, I do;  but as a Mummy its hard to imagine putting your child at risk for the better good, I can fight Charlie's corner without having to do that.

Anyway, Charlie went back to school the following day on maintenance doses of ventolin due to him still having the virus.  I too have had the virus and am still coughing today as I type this.  Charlie is now off his maintenance dose but if he starts sniffing we give him his rescue inhaler before bed and also in the morning before school.  His teachers have their own inhalers should he need more.  These last two attacks have been quite frightening to me and I am eager to see his consultant again.  The one thing that has upset me more than anything is reading his discharge notes and having him described as a "known asthmatic" - although a very kind lady on our support group told me that she was once described as a "geriatric mother" and not to take much notice!  It made me smile when I needed to smile.

Here's hoping to Charlie recovering in full and not slipping backwards over the next two weeks of term time.

24.09.17

The last two weeks have been very positive although at times very uncertain.  Charlie started full time school on Wednesday 6th September.  He really enjoyed it as he is in the same class as his best friend (his "bro!") and his cousin.  I worked the Saturday night and was in bed from about 10.30am Sunday morning until 5pm.  Charlie was absolutely fine in the morning when I kissed him goodnight.  He had looked pale the night before but we put it down to him being tired from all the excitement and new routines at school, all the kiddies looked pale.

At 5pm Charlie woke me up and immediately I was alarmed by the colour of his face.  He looked pale and had that mask I have referred to before around his mouth and under his eyes.  I shouted Chris to see if Charlie had had any of his blue rescue inhaler during the day and Chris replied that he had been absolutely fine.  Charlie was also very excited and was taking random breaths during his sentances.  Chris said he had been running around playing and should be out of breath.  I asked Charlie to calm down and we went downstairs to eat dinner and watch tele.  Then it was bath time.  Charlie had his bath and came downstairs to me to be dressed ready for bed.  He complained of a tummy ache and said that he had swallowed lots of bath water.

Then it all got a little strange.  Charlie's breathing rate did quicken, nothing alarming but it did get faster - which it would if you felt sick which was the next thing he said.  We gave him his preventer inhaler and four puffs of rescue just to cover him.  He settled but spent most of the night moaning in his sleep.  At about 4am he came into our bed following a nightmare but his breathing was absolutely fine and he was quite chattty.  At 7am it was a completely different story.  Charlie's temperature was sky high, I could feel the heat humming off his body without even touching him. His breathing rate was high 30's per minute so I gave him four puffs of his rescue inahler expecting to have to give him more but this again settled him.  He had Calpol for his temperature and just slept.

I contacted the Doctor and they could see him at 9.30am so Chris took the other two children to school and I got changed ready to take Charlie to see our GP.  Dr Gopal checked him over thoroughly.  His feeling was that Charlie's tummy ache and feeling sick were asthma symptoms.  There were no signs of infection any where but Dr Gopal wanted to prescribe a course of prednisolone to keep in our fridge should the asthma exacerbation get worse he can start the steroids to reduce the inflammation in his lungs. His temperature was still slightly raised but the Calpol had taken affect.  Dr Gopal told me to continue four puffs of rescue inhaler every four hours for the next day or two and then reduce it to two puffs as a maintenance dose for the duration of the viral symptoms. 

Charlie slept solid for the entire day only waking up to vomit once.  I then found out that there were a couple of other children out of his class off with sickness and this really confused me.  What had caused his brathing to quicken?  His asthma is viral induced and he clearly had a virus but did he have an asthma attack or did we treat it as such because we expected it to be that?  What had I missed?  We usually get a three-four day build up and this time we got nothing.  It makes sense that the hot bath and then coming down into the cold air would trigger an attack whilst he had a virus on board but we didn't even know that his lungs were twitchy, unless we had missed the signs with him being at school and me being on night shifts.

He returned to school on the Thursday having reduced down to his two puffs four hourly. We hadn't had to use the prednisolone, I have enough steroids in my fridge to supply a body builder!  I went into school to ive him his mediation at lunch time and the teachers were absolutely brilliant in watching him for further symptoms.  By Friday night he was pale again, this time with a cough and runny nose.  We increased his ventolin back up to four puffs four hourly and carried this forward for the last week.  It was Friday just gone that we stopped giving rescue medications.  He is still coughing and still sniffling but he is stretching between doses with no drama.  His Consultant said we need to know what his body is doing and only use the rescue inhaler when he exhibits asthma symptoms or as a maintenance dose whilst he is flaring up.

Tomorrow he is back at school and I won't be going into see him each lunchtime.  I am so nervous but optimisitc that his body does seem stronger and comfortable that the teaching staff at his school are vigilant and will treat him as and when necessary.  I have just been left feeling confused!  Was it his viral wheeze/asthma flaring up or did he just get a couple of viruses one after the other that he coped with and would have coped without rescue medication - our Doctor thinks it was his viral wheeze, my gut was that he was going to flare, I just didn't expect it to happen as quickly as it did that Monday monring two weeks ago.  The surprising thing is, how he has managed on such low doses of rescue inhaler.  He has never coped this well before and I am secretly thrilled and do want to see what happens this week in the knowledge that his teachers will keep him safe.  

 

Unpredictable

03.09.17

I went for a job interview yesterday for a brilliant start up company enabling youngsters with disabilities to have adventures ranging from cycling to skiing to sailing.  The job was for three days a week with perfect day time hours, no bank holidays, no Christmas work and full of opportunity to train.  I accepted it on the spot out of sheer excitement and then had the worst nights sleep I have had for a while.

The truth is, I can not take this job.  Charlie was so poorly last Winter with his asthma and we are about to start the virus season again with the children starting back at school just next week, I wouldn't be able to keep hold of a job that I go off sick from as regularly as Charlie got sick last year.  Its not Charlie's fault, this will be the first year that we face the virus season using asthma medication and we have no way of knowing if  they are going to be effective or not.  Charlie is my priority but I am also very professional in my approach to work and I can not take a job knowing there is a high chance of me not being able to attend, leaving a small team in the lurch and letting the service users who I am supporting down.

I reluctantly sent an email retracting my acceptance earlier today.  The lady hasn't responded and I don't blame her; I have really messed her around.  The thing is, I really want the job.  We are already talking about the Christmas rota at work and suprise, surprise, no one including myself wants to work Christmas Eve, doing this would mean having to sleep Christmas day and even more dreadful, asking Chris to play Santa - he is not ready for that!  It wasn't just the hours of the new job though that caught my eye, it was the fact the company has been set up by the parents of one lovely disabled girl who want to give her life experiences rather than just day centre care where the majority of activities are centred around groups and crafts.  They want her to feel the wind in her hair cycling, the challenge of climbing, the cold snow when skiing, experience cooking, shopping  - just experience.  They know that she will never be independant but they want her to live and not let her disability hold her back from trying new adventures.

Charlie is so lucky in many many ways as are all of us facing less of a challenge in life than others but his condition does and is holding us all back in some ways.  At the moment, it has me cornered and surrounded by anxiety which is making me feel sick and stopping me from taking opportunities that I probably won't get again.  I don't want to sound selfish because I am not being.  Its just that I want to be a good Mum to my children and a good wife to my husband but am just constantly exhausted with night shift work.  I can not win for losing and its down to this horrible thing that can happen to my baby boy and how unpredictable it is.

I have to protect Charlie - which goes without saying.  I also have to protect my husbands job/career as he is the main earner of the family.  I also have to earn myself to contribute to our bills and commitments.  I also have to protect my other children, provide a home, sort the finances, do the meal planners, stick to the budgets; I am overwhelmed because I am tired, tired of night shifts.  I had the perfect opportunity to do something about this, sat a two hour interview and convinced these people to offer me a job in a field that I have very little experience and then because of Asthma, I have turned it down.

I am not angry with Charlie at all.  I would do anything to keep him safe.  This is not a rant about having children and responsibilities.  We will get through this winter with, I hope little incident and next year I can maybe look to see what other opportunities there are for us as a family, getting the work - life balance right.  At the moment, its really just me acknowledging how afraid of asthma I am and how its unpredictability has such a tight hold over me and how isolating that feels.  I am still so frightened of making decisions that will impact Charlie's chances during a flare up because I would never ever forgive myself.

I can still see his little face last November when I held him in hospital asking me to help him.

Our Brilliant Find!

We Found It!

Medical Pouch for the classroom

19.08.17

Our copy of Dr Slater's letter has arrived that she has sent to the school that Charlie starts in September.  Dr Slater has called Charlie's condition "Viral Induced Wheeze" explaining that "viral illnesses trigger (the) exacerbations (of asthma symptoms) where he will develop an increased work of breathing."  She then outlined the last six months of history including medicaionts, hospital visits etc and that she is going to write an asthma plan for the school nurse.  We are treating it as asthma but I am now holding on to more than a hope that this is NOT asthma and the little dude will be growing out of it at some point during his childhood.  Dr Slater has also referred to Charlie keeping his inhaler in a bum bag during break times as suggested by the school which is where today's triumph comes in!

I have spent the last week searching the internet and various shops for a child's bum bag or mini back pack that Charlie can wear without much distraction to his playtime to keep his inhaler and chamber safe incase he has an accute onset of symptoms.  I managed to get a travel medical bag for his classroom inhaler off Amazon which arrived a couple of days ago.  It is just the right size for the classrooms medical box and has a handy transparent window that I can place an alert card in with Charlie's details and instructions for use.  This card I am yet to produce and is on my list of must do's before the school term begins.  As for this bum bag, I have just been reaching dead ends.

Then today we ventured into town to do the annual uniform shop for the three children including school shoes, sports kits, stationary and bags.  I was hopeful when we went into a bag shop - literally dedicated to back packs, purses, hand bags, school bags, across the shoulder bags and bizarrely umberellas.  Charlie chose a Minion back pack for his lunch bag and books but could we find a suitable bag for his inhaler?  No.  We then went to a Sports Direct to get jogging bottoms for thse children only we couldn't find anything suitable because the school that Tom and Emily attend have gotten very strict on branding being on show.  We were due to go home when we realised we had parked very close to Primark  where we decided to look for plain black joggers, which we found no problem.  Then as we were walking to the girls section for Emily, I came to a tower of bags and there almost smiling at me was a girls Pokemon handbag - the sphere that the Pokemon get put into or something (I wasn't really listening to the children as I was trying to figure out if it was big enough to hold the chamber and inhaler, it was a nod and smile moment really).

Charlie fell in love with the bag and immediately took it for a test drive.  It was bouncing around all over his hip so I took another one off the shelf, unravelled the strap and had a little play to see if it could be converted into a back pack.  I like to think my Grandma is looking down on me from Heaven at moments like this as she was an absolute natural talent when it came to sewing and creating whereas I am normally useless BUT I figured it out and now we are the proud and slightly smug owners of a Pokemon inhaler bag that is due to be converted into a pre-schoolers back pack!  Thank you Primark  and thank you Grandma!  This week has also made me realise that there is a gap in the market for decent inhaler storage, a money making venture for someone with the right ideas I am sure.  Probably not me at this point though.

I can hardly believe that Charlie is starting primary school in a couple of weeks and that my little girl is moving up to her next school.  I feel quite relaxed about it at the moment.  I think that my anxiety has been downgraded due to us now referring to Charlie's health issue as a viral wheeze rather than asthma.  I know he could still be diagnosed with asthma when he is old enough for a formal diagnosis but my gut feeling is that he won't be.  I would be lying if I said I felt relaxed about Winter coming with all the colds and germs because just like last year, Charlie has had a brilliant summer with no problems now for a couple of months.  I don't want this year to follow the pattern of last year but given the medication he is now on, the severity of attacks are not going to be as bad if you look at it logically.  Overall, the stress that has made me cry, stopped me sleeping, given me nausea has backed off and I am excited for my little boy, ever so slightly worried but not as frightened anymore.

13.08.17

On Wednesday we took Charlie to see his consultant, Dr Slater at the hospital.  As we arrived we were taken through to a side room where Charlie was measured and weighed.  Charlie is definately not a shy child but started acting very sweet and baby like.   The HCA took a liking to him and made a fuss of him  before showing us to the waiting room.  We didn't have to wait long at all before Dr Slater called us into her room.  There I gave her the list of my diary entries outlining Charlie's asthma since we last saw her in April.  Seeing it listed on paper made me realise what a tough three months he has had with his asthma - two lots of prednisolone, two out of hours Doctor visits, a nebuliser and countless uses of his rescue inhaler.  His ashtma has flared up every 5-6 weeks and always on the back of a cold or virus.

I spoke with Dr Slater about my concerns for school, about the suggestion fo him wearing a bum bag for him to carry his inhaler and volumatic chamber, whether this was safe or practical and my concerns about staff refusing him his rescue medicine if he requests it because of his asthma symptoms being quite a-typical to what most people expect.  Dr Slater said that we could give Charlie the smaller aero chamber for both his classroom and his bum bag.  She advised that she would write to the school and the school nurse before he began back in September regarding his flare ups and action plan.  Dr Slater sounded his chest which was crystal clear and said we could see the asthma nurse before we went to look at Charlie's inhaler technique and introduce him to using the volumatic at home without the mask.  

Dr Slater did not want to change his medication and then said something which I didn't expect to hear and made me fill with hope.  She said that a lot of children who suffer viral wheeze eventually grow out of it.  She didn't say asthma, although we are treating it as such, she said viral wheeze.  This would mean like I have previously hoped that as Charlie's lung capacity increases, as his immune system matures and gets stronger, as he gets older, these asthma attacks or episodes will become less and less until they stop altogether.   I am even more determined now to re-visit some of the ideas that I have previously had to help my little man.  As of this weekend, all of my children will be starting their daily multi vitamin tablets building them up hopefully in time for the Winter bugs.  We are also going to go swimming more often as a family as it is very good exercise for someone with asthma providing we are careful about fluctuating temperatures, chlorine smells and taking him if he is unwell, which we wouldn't knowingly.  I am also revisiting all of our diets and making sure we eat food that supports the immune system.  If Charlie can fight off the bugs before the wheeze is triggered, he will suffer less over Winter.

Winter is the test and I can not do what happened last winter again so the fight is on.

Before we left the hospital we saw the asthma nurse who taught Charlie how to use his chamber without the mask.  He was brilliant at it and much prefers to use the mouth piece although the count is much quicker and it makes him cough quite a bit more which probably suggests he is getting a better dose of his preventer medicine using this technique.  We are being stricter on him having a drink afterwards and doing his teeth because the spray is going more directly into his mouth and can cause thrush and irritation.  Charlie is doing really well.  The aero chambers that he will be using at school do have a mask but as he is likely to be unwell at the time these are required, this is probably better.

Curiously today we have received a letter from the asthma nurse at our GP practice.  I am going to contact her on Monday to see if the yearly review she has suggested is necessary given that I have never managed to get an appointment with her or been offered one until now.  I don't want to take Charlie out of school when he is already under a Consultant and will be seeing Dr Slater again in three months time but I am wondering whether speaking to her may help me with the school at all?  I will contact her over the phone and find out the best course of action.

Overall,  we have had a very positive week with Charlie's condition.  He has been well and has not needed any of his rescue meds and we are busy writing lists for things that we all need for school.  September is a whole new chapter...

Quick Update

05.08.17

I spoke to a friend last night at length about the role of dinner ladies at school.  Being one herself she was able to give me so much more information than I had gleaned already.  She advised me that at lunchtime there would be four dinner ladies looking after the two playgrounds and I should confirm which playground Charlie's year play on.  Out of those four dinner ladies, there will be the team supervisor who is first aid trained and trained to administer Charlie's inhaler should he need it.  It would be a good idea for him to carry it in a bum bag so he can take it out and back into school and she also advised that I check everyday who the designated first aider is on the playground so that Charlie and his friends know where to get help.

I think the only thing that is bothering me is timing.  I have to tell myself though that if Charlie was unwell and at risk of an asthma attack, I wouldn't send him to school that day anyway.  I also have to acknowledge that his attacks have taken us by surprise occassionally and there has been the expected delay of getting his inhaler bag out of his rucksack, putting the chamber together, shaking the inhaler etc and we have still managed to assist him.  I am so grateful for the chat I had with Sarah because in my mind Charlie would be wondering around whilst struggling to breathe looking for help.  She has reassured me that someone would get to him before he needed to look as long as I communicate with the team daily.

Its another thing I have written down.  I don't think I will ever feel prepared!

Some Good Advice

02.08.17

I wanted to share some suggestions about children with asthma and how they manage at school, in particular with their inhalers.  As you know I have been worrying about the practicalities of Charlie carrying his own inhaler at school because of his age and the fact that he can not yet self administer the medication (to be honest, I would not expect a teenager to do this during an asthma attack let alone a four year old.)  I put the question to the suport group that I have joined on facebook to see what other parents and carers have tried and tested.  Here are some of the suggestions that I have had back already and my take on them:

1)  Defer Charlie for another year as he is only four and start him at school in September 2018.

I have considered this and talked to my husband about it however we have both agreed that he is ready to start school.  The nursery he has attended five mornings a week when he has been well is part of the school that he is starting and a lot of his peers are moving up to reception class this year, the friends that are not moving up are younger than Charlie and you can see the difference in ability without seeming rude.  

2)  Have him carry the inhaler on his person but make sure he has a designated adult each day to go to should he need to use it.

I like this idea because it takes a lot of responsibility off Charlie.  However, he is still carrying his medication and it is not just Charlie that I need to think about, it is his little friends.  Ventolin as a rule wouldn't really hurt anyone if taken BUT that is not the point,  it is still a medication and children are curious.  I wouldn't feel comfortable if another child was carrying medication around and playing with Charlie so as a parent I feel that this is not an option until Charlie is a lot older and more responsible.  I like the idea of him having a designated adult and I feel like they should carry the inhaler and he could collect it back off them at the end of lunchtime.

3) Put it in his care plan that he is given two puffs of ventolin before lunchtime begins to ensure his airways are open.

I need to speak to our consultant about this.  I don't like giving medication when it is not needed.  I am not really sure that two puffs of ventolin would do much prior to an attack anyway.  We are lucky that we do get a build up to attacks so in the event that Charlie has cold symptoms or a virus, we could perhaps have it in his action plan to give preventative rescue (a juxtaposition of terms I know but it does work if timed properly as we found out recently) and otherwise, have a detailed crib sheet about his signs when he is flaring up.  I think the key is, if Charlie says his breathing is fast and he needs his inhaler, he is given it whether or not the member of staff he is talking to deems it necessary or not.

4)  I go into school at lunch times to assess him and medicate if needed.

I would do this without hesitation and have considered putting this forward.  However, I am not sure that Charlie wants to see me every lunchtime when he has just started school or whether this will disturb him (I can guarentee he will want to come home!)  I also work nights and on week two of my rota between Monday-Friday, I am in bed for three days following shifts.  I know my mum would step in on the days that I need to sleep but mum is retired now and its a big commitment when she wants the freedom to go climbing mountains and the like with Dad!  Really, I only want to go in when he is flaring up, not when he is well.

That's what I have so far.  I think all this hinges on what our consultant says and what paperwork we can put in place with the school nurse.  I am planning to put a folder together once I have spoken to our consultant and making sure every staff member reads it.  I am going to set a gold standard for Charlie because as unlikely that it is that his asthma will get to the life threatening stage - its so hard to even type it - three people a day die from asthma attacks and a lot of those tragedies could have been prevented.  I would rather be the nightmare parent who fusses over every detail, knowing that I have done everything I can to protect him than leave it to chance.

I am extremely lucky that I have a school with a staff who are very supportive and want to work closely with parents.  I just need to be prepared and have a plan B to fall back on.  Its a work in progress.

Holiday and Reality

30.07.17

I haven't posted for a while.  It is not that I haven't wanted to, I have just been crazy busy with managing Charlie's cold, working nights, picking up extra shifts, arranging Charlie's birthday party (he was four on 18th July!) and packing for our holiday which started on Emily's birthday - 22nd July.  It is probably easier for me to work backwards because I have had mainly good days but a couple of awful ones.

Our holidays was in Lincolnshire.  We spent a week on a Haven campsite where we hired a van privately direct off the owner.  We were staying at Cleethorpes, the first time in this area for us and we have had an amazing week.  We booked the holiday as a collective birthday surprise for our three children as they are all summer babies with their birthdays within four weeks of each other.  Charlie has loved the beach and playing with his big brother and sister.  His asthma has been non-existent and we have only had to think about it twice a day with using his preventer inhaler and when we used the swimming pool.  The lifeguards were amazing.  I spoke to them about his asthma and the unlikely event of him having an attack as he was well but they insisted that the inahler be kept at certain points inside and outside depending on what pool we were in.  They said they were there to assist us if we needed them.  We were in the pool all holiday without incident for Charlie.

I did have a worrying moment with Emily at one point.  I could not quite figure our what had happened to cause her to lose colour in her face, she gained that pinched look around her mouth and nose and said that it hurt her to breathe.  We took a rest at the side of the pool and did some breathing exercises but it wasn't very effective and even though it wasn't getting worse and even though the ventolin we carry is prescribed for Charlie, I took the decision to give Emily two puffs of the inhaler through the chamber.  It relieved her breathing almost immediately and the colour came back into her face, after five minutes she was swimming again.  A couple of things may have played a part in what had happened to her.  She had been swimming under water a lot like a mermaid and had then gone outside to use the lazy river.  The temperature difference from inside to outside was quite extreme so this could have taken her breath and whislt she was in the lazy river a group of rowdy lads managed to unwittingly pin her against the side, I got them to move quickly but I could tell it had caused her to panic a bit.  Anyway, to be vigilant, I am going to book her in at the Doctors in case she needs an inhaler of her own.

Prior to the holiday Charlie had had that cold which we managed with regular use of his ventolin.  A week after it calmed down and he was off his ventolin, he started to sneeze and cough again and his colour changed.  I dropped him off at nursery after giving him four puffs of his inhaler and spoke to his teacher who assured me they would be vigilant.  I went home and fell to pieces.  I was so frightened that I wouldn't be there if he had an attack to help him and was physically shaking at the thought of leaving him at nursery.  I thought about going to my mum's but felt embarressed as I couldn't stop crying so I rang my husband who told me to go and get him if I was worried.  My cousin then text me about meeting up and I told her how I was feeling and she told me to just ring nursery within the hour to check on him which is what I did.

Charlie had approached them during playtime to say that his breathing was faster.  I am unsure exactly what happened next but his teacher who suffers asthma herself and who I had spoken to that morning went to him, placed her hands on his chest and couldn't feel any "crackles" and couldn't hear any wheezing.  They then stayed with him until his breathing rate had gone back to normal and told him he didn't need his inhaler.  Charlie was confused because he said when he told them his breathing was fast they said no to his inhaler.  He then told me how his teacher had assessed him so I explained to him that his breathing may have been fast because he had been running around and not necessarily because of his asthma.  I am not entirely sure how happy I am about all this.  I believe his teacher made the right call and Charlie didn't need any further ventolin for the rest of the day but and it is a big but for me; wouldn't it have been better to give him two puffs of ventolin to cover the possibility that his asthma was flaring up?  We have a consultant's appointment on 9th August and I want an action plan writing up with instructions on what to do and when.

The other anxiety I have about school is playtimes.  Charlie's inhaler will be kept in the classroom in the medical box as dinner ladies are not permitted to carry medications, administer them or stay around particular children - all this I understand but it isn't going to help Charlie if he has an asthma attack.  The headteacher has suggested Charlie has his inhaler on his person in a bum bag - but this is then giving him the responsibility of medication which he can not administer himself and he would still have to walk to find an adult, a thing he won't be able to do in an acute attack.  So now I am wondering what to do. If Charlie has a cold or virus, I will adminster four purffs of ventolin before he goes to school (if he is well enough) and I will then go and check him personally at dinner times. During break times his teacher will be with him.  I need our consultant to back up my plan or give me a better answer because I just don't think the school are prepared for this.  The head teacher has done everything right, been really helpful and is speaking to the school nurse to get a care plan in place and has reassured me that they have other children in school with asthma.  I just feel that up until now the school have been fortunate that no child has had an accute attack because the policy in place is not protecting them.  What is the answer?

And that is where I am at.  Anxiety hell.

In Control

11.07.17

Did we do it?  Did Charile really have a cold or did I imagine it?  After nine days of ventolin- seven on four puffs six hourly and then the last couple on two puffs six hourly, Charlie is back to just taking his daily preventer medication.  There was no asthma attack!  The first time since things got serious in November last year that he has had a virus of any kind and started to flare up to avoid an asthma attack.  That means we controlled it right?

I am so elated but also slightly in disbelief!  Charlie has full colour back in his face, is running around with full energy and eating us out of house and home.  He isn't sniffing anymore and the slight cough he developed (like he was clearing his throat more than anything) has disappeared.  My husband has started a cold and so have I which by rationale I am thinking proves that Charlie did have a virus of some kind and by early intervention, we have sailed through it.  I have to give the credit to my husband because he suggested starting the ventolin, I still had the feeling we should wait a day or two - which is the worst thing you can do with asthma, you should never wait.  Its just that Charlie wasn't sniffing that much at all.  I am really glad that my husband started the ventolin, I don't konw where my confidence was on that day even though it is usually me that makes the decisions.

WE HAVE AVOIDED AN ATTACK!

Charlie's asthma has been controlled, I personally had a bit of a scary moment at work Sunday night.  I have been waking up with a sore throat and tight chest for about four days now and sneezing a lot during the day.  I don't normally suffer from hayfever but put these symptoms down to that as I haven't actually felt unwell, haven't spiked a temperature, gone off my food or much else to suggest I needed a Doctor.  However, I worked Sunday night and shortly after I had arrived, I had chest pain and really struggled to get my breath.  My voice was weak, I couldn't complete a sentance without taking a sharp breath and even though I sat down, it wasn't correcting itself like it has done in the past when my chest has tightened up.  Luckily I had a ventolin inhaler in my work bag (I have inhalers everywhere to hand incase Charlie needs to use one) and took two puffs of it trying to remember my mums advise on inhaler technique.  It made me cough like crazy and then I had to start my calls which meant a lot of stairs to meet my first resident.

My residents apartment was like an oven, the air everywhere was dense and still and hot.  I couldn't speak because my voice was just breathless.  I slowed myself down and got on with my work and by the time my lovely lady was in bed safe and I was writing her notes my chest suddenly cleared and my voice got strong again.  The relief was immense!  I don't know why it took so long for the inhaler to work, I thought they had an immediate effect unless I hadn't taken enough?  Anyway, my chest has been a little bit tight since then but not affected me in a noticeable way.  I wonder what it was?  Upper respiratory viral-ma-call-it or asthma?  About three years ago following a bad chest infection my Doctor told me I had asthmatic tendancies and that really is about it, my own inhaler went out of date some time ago having never been used.

I am unsure now whether or not I should go to the Doctor myself knowing what I know because of what Charlie's condition has taught us.  My thought is that if it happens again, I have ventoline to hand even if it technically doesn't belong to me and then I could go.  I am a bit worried though.  Next weeks weather forecast is looking to be a scorcher, if I did have some kind of asthmatic episode, I don't know what triggered it so I am in that unknown zone which I hate.  I think I will monitor it, see where it goes but just make sure I do have ventolin on my person at all times for now.

As for my little man, he is having his 4th birthday party on Sunday and I am absolutely thrilled that his asthma did not flare and turn into an attack for him.  I have also spoken to his head teacher and form teacher for Septembers school start and they are being so supportive, the head teacher is going to get in touch with the school nurse to get an appointment for as early in the term as possible and by then we will have a full personalised asthma action plan in place from our consultant who we see in August.  I am also in the process of putting a folder together about Charlie's details in case (Heaven forbid) a 999 call needs to be made and also what we know about his asthma, his triggers, his tipping points and signs to look for before a flare.  I still feel a little anxious (and am wondering if that is actually what is wrong with my chest) but am beginning to feel a touch of confidence which has only been helped by us managing to control his asthma this last week or so.

At this point I daren't not get over excited and think that maybe his lungs are getting stronger, maybe his immune system is getting more effective and maybe, just maybe he has started to grow out of this.  My heart wants this so much but my head is telling me that we have effectively controlled his asthma because of what we have learned about it and probably because luck was on our side this time.  Whatever has happened, I am over the moon, it feels like a massive step in the right direction.

Managing A Cold

 07.07.17

Charlie's sniffles turned into a lot of sneezing so for the past week he has been on four puffs of ventolin three times a day - which works out to be six hourly.  We haven't seen a cough, Charlie hasn't been unwell or out of puff as such but we are trying to manage the potential cold virus that he may have by keeping his airways open.  So far, it has worked as nothing has flared up, even though my husband and I are constantly checking his breathing rate and looking for changes in his complexion.  Not wanting to get over confindent but we have now decreased his ventolin to two puffs twice a day.  If he gets over this cold without his asthma flaring, it will be the first time EVER that we have controlled it this successfully.  My heart would sing if this was the outcome, it would be amazing to be able to report this to Charlie's consultant in August when we have our follow up appointment, which ame through the post this week and it would reassure me that with the right timely action, we can keep him safe. 

I worked last night and have just picked up the children from Serena, our wonderful childminder.  Serena said to me that she thinks Charlie may be coming down with something owing to fact that he hasn't stopped eating.  He is still hungry now we are home having creamed a banana and three biscuits so far, I will be making him a milkshake in a minute to help fill him up!  I hope Serena is wrong on this, I hope Charlie is just having a growth spurt.  It was so hot yesterday that he fell asleep very early so effectiely missed dinner, just snacking on cereal after school - it could be that he is balancing himself.  I have looked at his face, his colour is very good but he does have the purplish-grey heaviness under his eyes, which is a tell tale sign for Charlie to have a flare.  I think we will possibly increase his ventolin back up to four puffs regularly in case the cold is about to come out.

We will be having a quiet weekend.  I am off work tonight which is lovely as today is also my Birthday!  Unfortunately, I am in all over the weekend so we won't be going for any walks as a family, might be a good idea to let Charlie have a quiet weekend anyway, just in case.  We are away for a week at the end of July and the park wae are going to is very action packed, lots of swimming, walking and physical activities, I really want Charlie to be 100%  In preparation for this holiday, I need to also research the local hospital with children's facilities, again just in case.  Its starting to be more about proactive prevention than what has happened previously which was about gaining knowledge about his condition.  I would love to say that we are acting in confidence but there is still an element of fear of what we are trying to hold back and we are still getting daily reminders of heartbreaking situations where children have not been so lucky with their asthma.

From his point forward, it is just about keeping his airways open.  He is lying on the sofa at the moment sniffing a lot, I can hear the mucus at the back of his nose.  I am trying to encourage him to blow his nose rather than sniff but its hard for a nearly four year old to grasp this!  Its Charlie's birthday on the 18th and next weekend we are having a family party in our garden to celebrate.  I think we will increase the ventolin back up to cover all bases, he has a busy couple of weeks to enjoy and his asthma is not going to get in his way if me and his Dad have anything to do with it.

A Good Run

22.06.17

It will be four weeks on Saturday since Charlie's last flare up and his pattern this year so far has been flares every four-five weeks.  It seems neurotic of me to even make note of timings, but I do.  I have been watching him really closely over the last few days, particularly in this heat.  Yesterday he seemed ever so slightly out of puff and has had a bit of a blocked nose.  Charlie doesn't have hayfever, his blood results showed a negative for allergies to pollen, so if he is starting to sniff, it will be because of a virus.  He hasn't needed any ventolin though and nothing has progressed thank goodness, however, i do feel a little on edge.

Other than watching him closely, we have enjoyed this week.  Charlie ran the toddlers race at his sister's sports day, which was laughable considering he bunked off nursery to be there in the first place and was running against actual toddlers with nappies, dummies and blankies - it was no wonder really when he crossed the line first!  The following day, he ran in his nursery sports day and came third, an achievement in itself, I am very proud of him but it does give you an idea how easy the field was at his sister's sports day!  I have said before how lucky we are that Charlie's asthma is not triggered through exercise alone, when he is well my boy can climb mountains and I am so grateful for this because he really has got a sporty build and competitive personality.

Today I went to collect his inhaler prescription which the pharmacy had misplaced - it wasn't their fault at all, we put the prescription in on the 12th June and ideally it should have been collected within three working days but I have been working a lot of night shifts and not getting the best of rest due to the weather and work harressing me to work more as is the way in the care industry.  I got there today and the prescription was found in a drawer - the good news is that not only was his usual preventer and rescue inhaler included, so was an extra volumatic spacer and a spare ventolin - this means that when Charlie starts school in September, an inhaler can be kept there indefinately in his classroom should he need it.  Even better, my beautiful, talented cousin has offered to make Charlie his very own draw string inhaler bag as his spacer is two large to fit in the medical boxes, clearly labelled so it can hang by the medical boxes and be carried easily where ever Charlie goes.  She is going to make it look medical with the green background and white cross but personalise the front so that Charlie can identify the bag as his own.  I am so grateful to her, she takes after my Grandma for being able to sew and it makes me feel like a bit of my Grandma is looking out for Charlie as well as the rest of us, even though she is no longer with us, as daft as that sounds.

Speaking of inhalers, I have sent my eldest, Thomas to school with his ventolin this week.  Thomas does not have asthma but suffers dreadfully with hayfever and migraines.  His hayfever is the type that gives him swollen, painful eyes, headaches, lethargy and a sore throat.  His chest sometimes tightens and a year ago he was prescribed an inhaler just in case.  This week he has really suffered and he had this look about him that I recognise in Charlie when his asthma is about to flare.  I practically had to beg for him to deliver his inhaler to the school office (to make it clear, Thomas does not have asthma, if he did, that inhaler would be on his person) just incase he felt a little tight and wanted to use it to ease the symptom.  He hasn't needed it and is unlikely to, he never has needed it - it was just a precaution and I am very relaxed about the school having it although I still think they should be looking at their medication policy - when Charlie starts there in five years, if he still has asthma, I will do whatever it takes for him to have his medication on him - thats a fight the school need to prepare to lose, because they will.

Regarding preparation for schools and policies, I need to book an appointment with our asthma nurse Karen.  We have managed to miss each other on numerous occasions so far due to us being with Doctors so often.  I now need an official asthma plan writing up for Charlie ready for September for the school to file and have in place should anyone need to follow it.  I am drafting my own based on the knowledge we have gained over the last few months and will be going dramatic with it.  Hopefully Charlie will be stronger this coming winter but I can only base the plan on what we have been through, not what I want to happen.  Everyone's asthma plan is different as it has to be tailored to the individual based on their experience of triggers, allergies, medication effectiveness; you can't blanket advise asthma, you can't box it because it is so unpredictable.  I am reminded of this everyday reading the comments on the asthma support group I am a member of on social media.  What some of these children are going through right now is heart breaking but I now from our experiences that time teaches a great deal to help keep people safe from this condition, luck and circumstances being on your side.

Charlie is having a good run at the moment, long may this continue.

Re-Focus

12.06.17

I have been thinking quietly to myself over this last week.  Charlie is very well at the moment and a part from his twice daily dose of Clenil Modulie (his preventer inhaler) there isn't much else happening to remind us that he has asthma.  It has gone quiet which has gotten me quietly thinking.

I protect Charlie, probably more than I protect my other two children, though I love them all equally.  Charlie is the baby of our family and there is quite an age gap between him and his older sister and brother.  He gets away with A LOT!  We all know it, we all accept it, in fact we are more than willing to give him rope because his asthma takes him down so often, we compensate.  However, Charlie isn't the tiny tot he was when he first lay in a hospital bed with oxygen masks and wires stuck to his chest and dangling off his tiny toe.  He is going to be four very soon and whilst he is an absolutely pleasure; loving, kind and funny, he is by no means always an Angel and this has got me thinking!

I compensate a lot.  Sometimes we will go to our local charity shops for a browse and more often than not, if the children are with me, they get a treat.  I do this because my children don't get much else, we have very little budget and what we do have goes on food and petrol.  These charity shop finds are a good way of treating the kiddies for not a lot and the money goes to a good cause.  However, it all adds up and in reality they just bring home more tat that they don't need which inevitably gets donated back at some point in the future.  I was going to take Charlie into the charity shop today but prior to going we popped into the supermarket to get some bread and the little lad wanted EVERYTHING - liquorice, chocolate, a toy - I asked him to be good and he stamped, yelled MUMMY! over and over and said I WANT, I WANT that many times, if someone had given me a pound for every time he said it, I would be rich.

It was one of those moments where the older customers smiled sympathetically, the working lot tutting and frowned in my direction and others just looked away trying not to notice.  I am not bothered at all by any of this, children misbehave, they are just children after all.  If people want to judge, that's their problem and not something I will lose sleep over.  However, as soon as we got outside the shop, Charlie headed for the charity shop.  I asked him if he had been good and he said yes!  Now normally (and ashtma plays a part in this) I would giggle at his cuteness and take him to the charity shop on the weak promise that he would behave from now on.  Today however, I calmly got down to his level and told him why he hadn't actually been that well behaved and the consequence of this was that we were going home.  We would come back to the charity shop another time.  He complied (thankfully!) and we came home for lunch and no mention of the charity shop at all for the rest of the afternoon.

The thing is, I let Charlie's asthma makes me over compensate for what I feel is just unfair on him.  The truth is, its a condition we have to live with and it is not going to dictate my parenting style with him.  I have two other children who have already noticed the differences between how I treat them and how I treat Charlie.  Not anymore.  Charlie wet his bed again last night and was visibly shocked when I showed him how disappointed I was.  He said, "you can't shout at me for an accident," and I told him, I wasn't shouting but an accident is once in a while, not every single night.  I told him he is a big boy now and needs to try harder, a slightly different reaction to what he would normally get.  I don't want to teach my boy to play on his asthma.  I dont want his asthma to be the excuse for bed wetting, misbehaving or anything else that crops up as he gets older.

He is my boy first.  The condition comes second.  So now I have decided to re-foucs.  Re-focus my parenting (in a positive way of course), re-focus our finances, re-focus my direction in my job.  I do not have to make big changes but I will be making some.  I can't keep sitting around waiting for the next flare up, it is not productive and just puts me in limbo and during that time, Charlie is not getting the direction from me that he needs.  Time is moving so quickly and before I know it, those early years influencial moments that parents have over their children will be gone and the real battles will start.  Its time to re-focus.

Election Day

08.06.17

Don't worry!  I am not going to write a political blog trying to convince you all to come round to my view of the world and elect the party that I want to lead the country.  I couldn't do that if I tried actually, I have found this election to be really stressful for many reasons.  Firstly, because I havent had the faintest idea who to vote for until I stood in the booth today, pencil in hand.  Secondly, because politics seem to bring out the absolute worse in people, I have found myself being put off political parties purely based on the way their supporters have conducting themselves on social networking sites.  I can not stand propaganda, nastiness, mud slinging or the suggestion that if you disagree with a certain way, you can not possibly be educated or care about the future.  My view is this, we live in a democracy, we all have access to information, we all have the right to make up our own minds and vote with our own feeling.  

The absolute worst experience of the campaigning was when I commented on a friends post.  She too was sitting on the fence and we basically spoke about the pro's and con's for voting Conservative and did the same for voting Labour.  A lady, who I don't know, who I have never met commented that she had been on my profile and found out that my child had "chronic asthma" and then posted a story about her Mother in Law who also had chronic asthma and how the NHS had let her down, not to mention the welfare system and anything else that has experienced cuts from the government.  Well, you can imagine I skipped right upstairs and dug out anything red from my wardrobe, got changed immediately and went knocking doors to drum up support for Mr Corbyn.  Actually I didn't, I told her very politely to go away.  How dare she drag my three year old into a political debate trying to emotionally blackmail me into how to vote.  My boy is off limits, all three of my children are.  

Will also mention that Charlie does not suffer from chronic asthma either.  Who the hell did that woman think she was?  And for the record, even though our area has experienced terrible cuts to our children's services at our local hospital, it has not affected the standard of care Charlie has received when it has been needed.  Sure, we have had to travel a few miles in the opposite direction to another hospital, sure at first we were a little lost in the different  systems but we have learned the new ropes and I have every confidence in the local NHS service that we have access to.  I am against cuts but they have happened, it is never going to go back to exactly how it was and I won't be scared or guilted into voting a particular way.

Anyway, I have voted today.  I am proud we live in a democracy and I get to express my view.  Whatever tomorrow brings, it is what we all voted for one way or another.  That is a beautiful thing.

Away from election talk, I had another really interesting conversation with one of the playground mums.  We were swapping notes on getting out and about for walking, camping and relaxing and she recommended Shell Island.  My husband has mentioned this place a couple of times having spent a lot of his childhood there, so this weekend we are going to pitch up tent we have had out of Dad's garage, give it a clean and start our camping gear list to get prepared for a trip later in the summer.  That wasn't the interesting part though, what was interesting is this lady said to me, she didn't realise how stressed her children were until she got them outdoors and they had the freedom to relax.  It really resonated with me, particularly if we use our ten year old as an example.

Thomas lives on his computer, he is a gifted, clever lad when it comes to programming, coding and lots of other things I really don't understand.  Whenever we go our for the day, he spends the first hour complaining but once he relaxes, he is like a different boy.  I love seeing my children relaxed and carefree, not bound by time.  Children of today really have a lot more pressure in their lives.  I am not saying technology is a bad thing, of course it isn't but when I was a child, no one had to teach me how to slow down and stop over thinking because I never did that in the first place.  We would run home from school, have a bowel of cereal, get changed and go outside.  The fresh air would make us tired, we would eat dinner and then have a sound sleep.  We had a corner on our street where all the children met, it changed depending on the time of year from Conker Corner to Skateboard Corner - the outdoors was our life.  The outdoors for my children is a treat but we are slowly changing this, it is going to become a lifestyle for our family.

From an asthma point of view, for some people stress can trigger an attack.  I am certain this is not the case for Charlie, although he is only three so I am not sure he even gets that stressed!  Exercise is recommended for asthma providing the condition is nicely controlled and rescue inhalers are carried at all times.  There is nothing like climbing a good hill to increase lung capacity and control breathing.  I have found myself (I don't have asthma but I do get anxiety and up until recently I had been experiencing panic attacks) that being outdoors taking in nature really calms the soul, I have started to really look forward to our family days where we squeeze in a walk or disappear for the day with a picnic.  I think everyone who is physically able should be spending more time in the open and less on their screens, I would rather have a conversation with someone in person than through social media, even a political one!

Whatever the election result tomorrow, I begin a campaign to promote my family's wellbeing.

For My Mum x

05.06.17

He's back!  Thankfully Charlie's cough has now completely gone.  He has been having massive coughing fits first thing in the morning for the last week which have made him gag, be sick and had me reaching for his ventolin.  I can only assume that he has had a mucus drip, as he has been lying on his back asleep the rubbish in his nose has dripped down the back of his throat and settled on his chest, hence why he would need to cough up a lung when he woke up.  Charlie doesn't tend to cough a lot during a flare up - we have never gone by a cough to administer his ventolin - his trick is normally to breathe at a ridiculously fast rate and tire himself out whilst his oxygen levels decrease.  This cough worried me, I hear from so many other Mum's whose children have varying forms of asthma and it is always the cough that they talk about first.  I was worried that maybe Charlie's asthma had changed and what that would mean for him.

Anyway, he's back and is on true form!  We had a family get together ar our house over the weekend to celebrate my Mother's 60th birthday and retirement.  My mum has been a nurse since her very early twenties and has had mixed feelings about retiring as this career has formed a large part of her identity, of who she is.  When she finally retires she will be "just a Wife, Mum and Grandma," and she is not sure how she feels about that as much as she loves us all and as important we are to her.  I understand this.  As much as I hate the night shifts that I work, I love my job, I love learning, I love having a voice, I love making a difference.  If I could say anything to my Mum, it would be that I have always looked up to her for being so amazing at her job and not to worry about retiring, she absolutely deserves a rest.  

Her job as a Mother is invaluable, I could not have gotten to this point dealing with Charlie's asthma without my Mum.  We are still learning about his condition and having my Mum's validation and opinion on what research we come across means much more to me than any Doctor.  My Mum is the reason I have a voice.  Always the shy, goody-two shoes of the family, I have watched my Mum be assertive, firm and always fair and it is something, particularly in my work in the care profession that I try to emulate and it has given me confidence to gain knowledge and speak clearly, which has also been so useful when speaking to other professionals about Charlie's asthma. My Mother has helped my voice be stronger.  If I could say anything to her, its that even from the sofa in her conservatory as she sits relaxing with a book, listening to music or watching the birds, even from her garden as she weeds the borders, even in the shops where she hunts for the next shabby chic project, my Mum is always making a difference, to us.  She will never be JUST a Wife, Mother or Grandma, just someone who has worked her socks off and deserves some quality "me" time.


HAPPY RETIREMENT MOTHER!  AND HAPPY BIRTHDAY! xxxxx

Update

30.05.17

I took Charlie to see our GP this morning just for a check up following this weekends flare.  The Doctor we got to see was one we haven't before but she was superb.  She checked Charlie's throat and ears, took his temperature, his O2 saturations which are back up to 96 and clocked his breathing rate at 37 which is the top end of normal but not unexpected as he has been running around like crazy since he has started to feel better.  The best bit of news we received was that he is wheeze free.  The Doctor listened to his chest and could not hear anything, his oxygen circulation is very good.  The Doctor advised no more prednisolone as it has done its job and to wean down the ventolin.  We are currently at four puffs of ventolin every six hours unless needed otherwise.

Charlie has had a lovely hour on the park with me, his brother and sister and on the way home we picked up some milk and popped into the sweet shop for a pick and mix.  I remember when sweets were worth one penny each, so a 50p mix went a long way - not so anymore apparently but the kiddies still enjoyed their treat.  Charlie walked all the way down to the park, played, climbed and ran about and walked all the way back.  I believed the Doctor when she said everything had calmed down but Charlie's energy levels have confirmed this and put aside any niggle I may have had.

I am trying to think what has me so on edge considering how well we did to control this flare up and how quickly Charlie has managed to bounce back.  I think the speed at which he deteriorated in the car on the way back from Dovedale gave us a bit of a jolt.  We felt that we had everything under control and yet the asthma still jumped out at us and put us at high alert.  If he hadn't have responded to his ventolin, we would have possibly been in a hospital somewhere quite far from home.  We had both decided we were not going to miss out on quality family time as Charlie seemed very well in himself at the beginning of the flare up but I think we now both feel that maybe we took a risk travelling out that far.  Asthma is unpredictable at the best of times, I just don't like the feeling of being caught out even though I know deep down that if we were truely caught out, I wouldn't be updating you quite so positively.

Anyway, we are planning to do our river walk in a couple of weeks time when the virus that caused this has left Charlie well alone.  He is looking forward to it and it gives us some time to improve the picnic standards!  I just hope that he gets a good run now.  I think he is ready to start his Summer!

Dovedale

29.05.17

We went to Dovedale for some fresh air on Saturday morning.  Charlie was still on four puffs of ventolin every four hours.  We had planned to do the River walk which is a six mile round trip but Charlie just didn't have the energy levels and as soon as he was up and about being active, he didn't have the breath.  We had to increase his ventolin to six puffs every four hours as he was really struggling to stretch to the next dose.  

The weather was beautiful and we did manage to take our wellies down to the river bank and have a paddle in the shallow water.  Charlie skipped across the stepping stones but then needed carrying back to the car having gone quite pale again.  His cough was sporadic, coming and going but he was full of chat and fun, just breathing faster than we were happy with.  We pitched the beach tent in front of our car next to the river, set up camp and ate our picnic.  Charlie relaxed and the colour returned a bit to his face.  We then did something that I now believe triggered his deterioration on this flare - we treated the children to an ice cream before going home.

The drive back to our house from Dovedale is just over an hour.  Charlie had had his ice lolly and once strapped into his car seat, fell asleep immediately.  His breathin rate was still a little raised but I felt sure that as he went into a deep sleep, it would drop.  I can only assume that because the ice lolly was so cold and because the car was so warm, the change in temperature kicked his asthma off as he began to pant breathing at a rate just under sixty breaths per minute - that is extremely high.  I was able to disturb him and he still talked to me but was unable to do full sentances without a breath.  He had also started showing signs of recession around his ribs, though only slight.

We pulled into a service station and I gave him eight puffs of his ventolin.  I took him to the toilet so he could have a wee and so that I could see how much breath he had in his body.  He was chatting away to me about the service station and how it reminded him of holiday and the ventolin had clearly worked but at this point, I wanted desperately to go home, ring 111 and get the Doctors permission as I had promised to do, to start the prednisolone that we had in our fridge.

At 4pm I rang 111.  Charlie was coughing but was also full of beans.  The call handler did her bit and said she would get a Doctor to ring me back within the hour.  I put my head down on the sofa as was due to work the night shift and within the hour a receptionist called us to say that the Doctor was extremely busy and would call us within the next hour.  All this time, Charlie's breath rate is raised.  Eventually I spoke to a young Doctor who listened to me package nearly two years history into five minutes and then request to start the steroid treatment.  She declined and said she wanted Charlie seen.  I waited half hour to get an out of hours appointment which thankfully was local.  The appointment was 7.30pm and we weren't seen until 8.40pm.  Charlie was absolutely shattered, we all were.

The Doctor listened to his chest, took his temperature, which was fine and also measured his O2 saturations, which started at 92 (at which point I thought I was ringing in sick and heading to hospital with him) but raised to 95.  The Doctor agreed to let him come home and start his steroids and advised us to do eight-ten puffs of ventolin four hourly and wean him down as the attack subsided.

We are now on Monday.  Charlie has had three doses of prednisolone, I can't give him any more without speaking to our Doctor tomorrow.  He is still coughing.  He also has a sore throat, which has made me think that his tonsils have flared up triggering his asthma, so we are going to have them checked tomorrow as well.  It dawned on me that the out of hours Doctor was so busy and so behind that he immediately checked Charlie's asthma symptoms on my say so but didn't check his throat or ears - this is the same pattern we followed just four weeks ago on Charlie's last flare up.

I am exhausted.  I have done two nights and have been texting and ringing my husband checking up on Charlie throughout.  Chris has been amazing.  I think he has realised how lonely and frightening it is to have the responsibility of supporting someone through an asthma attack.  He looks pale himself and has had very little sleep as he has watched over Charlie like a hawk.  I knew we had it under control with the amount of medications available to us, otherwise I wouldn't have gone to work but I still feel guilty about having to go, if I don't, I don't get a wage. 

I am angry at the 111 service.  Believe me when I say, I use this service a lot looking after the elderly and it never fails to let people down.  The waiting times, the organisation, the lack of time to gain vital knowledge and do basic checks.  This service does not save the NHS any money at all, what it actually does is bat people about the system when it could be much more effective if it was re-structured.  I am angry at the Doctor who although was very sweet to Charlie, didn't check his throat or ears and I am angry at myself for not asking him too.  I am angry at Charlie's asthma for trying to hurt him again, it isn't fair.

I am grateful for certain things too.  My team leader, Lyndsey was so supportive when I rang her to say what was happening.  She offered straight away to prolong her day shift to give me extra time, which as it happened I didn't need but just having that net reduced my stress about work so much.  She also reassured me when I got to work that if I had to leave, I could, I just needed to ring our out of hours number and she would get someone to come in.  I know practically this wouldn't be very straight forward but I have already made up my mind that I would leave and get the sack to be with my little man, however, I did appreciate her support and reassurance, she is a good team leader.

I worked last night as well.  As expected Charlie has been steadily improving.  As I type now, he is fast asleep on the sofa breathing normally with no sound of an audible wheeze.  Yesterday, his lungs just sounded like they were rubbing together inspite of his ventolin intake, I hate that sound.  I hate asthma.

The most important thing for us to do next is the follow up to this flare.  I have recognised that the speed in which the flare itself happend was much slower than what we have been used to.  This could be because of his preventer routine and also because of his breathing exercises and our family walks.  I need to get his ears and throat checked and his chest sounded tomorrow and advise on whether he needs another two days of prednisolone, which we don't like to do due to his age.  I need to put in a repeat prescription for ventolin as we have used so much over the weekend and I need to take seriously how temperature changes affect my little mans asthma.  We thought we were treating him but what we actually did was set him up for a fall - and yet I knew this information, albeit in a weather context, it should have dawned on me not to give him that ice lolly.

Again, I look at him and it hurts my own chest knowing how bloody precious he is to me and how this horrible condition threatens the very breath in his lungs.  I would do anything to take this away from him and suffer it myself.  I would suffer anything myself for this to go away.  I know he will turn the corner to the point that we will be left wondering how he got so poorly in the first place and we will all relax for a short time before the next flare.  I feel like I have taken some steps back emotionally even though I have been the calm one this time round.  My heart aches to see my husband looking so worried and so tired.  I am sorry that I had to leave this at his feet this time because we can't afford to be off work and lose money.

I am so grateful that we have been able to control this and get him through this far at home.  I am confident that there will not be a relapse because I know how amazing our GP's at our surgery are and we will be there tomorrow.  I am just tired - not really for myself but for Charlie.  My gorgeous little cheeky chap needs a break now - longer than four or five weeks - he needs a long run of just being well.

Flare

26.05.17  

I am sitting here looking at Charlie watching Peppa Pig noticing how pale he is, how he has grey circles forming under his eyes and how his cough has gotten worse since it started in the early hours this morning.  I kept him off nursery today because these are all signs that his asthma is flaring.  He has had a snuffly nose since Monday so again it is viral induced and now has started coughing and rubbing his face, Charlie's indication that his chest is a little tight.  I keep asking him how his breathing is and he keeps replying "lovely" but I am waiting for that answer to change.  We started regular doses of ventolin this morning, hopefully we have started in time.  Even his posture has changed a little to compensate for his chest, he is lying on his side, stretched long with one of his arms above his head, he is trying to give his lungs more room.  These are signs, he is not distressed at all at the moment.

He is active enough.  He walked down to the park and had a play on the swings.  He got tired very quickly on the way back, another sign given that he can walk three milkes plus around Cannock Chase unaffected on a well day.  I ended up carrying him.  This heat is probably not helping him at all.  We are expected to get thunder storms tonight which should break the heat and thankfully as Charlie is not allergic to pollen, this should actually help him rather than tip his asthma flare over into an attack.  Many people will be the opposite, those with allegic asthma could really struggle with the weather this weekend.  The only thing that I need to be wary of is sudden changes of temperature as this has been known to trigger an attack with Charlie once his lungs were irritated.

I have one full inhaler.  We have taken ten puffs out of it so far and it holds two hundred.  I am trying to keep track of it because it is the bank holiday this weekend so we are going to struggle to get another one.  They only give us one at a time anyway from the Chemist - though I have just put in a request for a spare inhaler and volumatic spacer so that school can hold their own.  It was only the other day that they forgot to put Charlie's inhaler back in his bag so unbeknown to his childminder, he had no ventolin available all afternoon until I picked up on it.  It made me very angry to be honest - his wellies were put where his inahler bag is usually placed and it is written on his bag as a reminder to check for his inhaler.  Never mind that is was very muggy on Monday and Charlie had started sniffling, which indicates a potential mucus build up - hence why I have requested for school to have their own for him.

I did get to speak to the head teacher who assured me that each classroom has a medical box and all necessary medications for chidren in that class are kept in the box.  I just need assurance now that when he goes outside, so does his inhaler.  When Charlie begins to look like his lungs are twitchy, it affects my anxiety.  We are supposed to be going to Dovedale tomorrow to do the six mile river walk with a picnic.  My husband has just said we should consider somewhere more local if Charlie's asthma is flaring, just so we can get him help if he needs it.  I agree completely but am so angry at the same time.  Charlie loves walking and we love our family picnic days.  Money is tight but these days out are really inexpensive and we have the best of times.  Plus I am now working both Saturday and Sunday nights so tomorrow is our only chance for quality time.  Charlie suffers the most, it goes without saying but his asthma also makes things unfair for his brother and sister.

When Charlie coughed this morning, Thomas came running in to check that he was okay.  Even Thomas and Emily experience anxiety over Charlie's asthma.  I am going to do an internet search for somewhere local that we can go tomorrow with our picnic blanket.  Dovedale isn't going anywhere and Charlie's health is the most important thing to all of us.  We will just make whatever we do a really lovely experience and keep everything crossed that today is the worst that Cho's asthma gets this time round.  Its a good test of his new medication regime and whether coming off the Montelukast was a good idea.  I think that is possibly why I am feeling very nervous, he will be doing this flare with different medication so even though we have been here many times before, its not going to develop as predictably, hopefully because his increased preventer medication keeps it at bay.  Time will tell.  I really hope it is effective and this is not difficult for him.

Sadness

21.05.17

Its difficult to know how to put into words how I am feeling right now.  I am a member of an asthma support group on Facebook which has given me so many different emotions.  The group is so supportive of each other, I have felt knowledgeable and proud to be able to share information to those who have just started their journeys, I have be able to listen and chat to mothers late at night who are sat by their children's hospital beds, I have had suggestions given to me whenever I have had a question and I value this group so much for its positivity and support but today, I feel nothing other than sadness.

A gentleman has been brave enough to post that he lost his beautiful seventeen year old daughter just seven weeks ago to an asthma attack.  He spoke to her just two hours before she collapsed on a phone call.  He wanted to share this with the group to emphasise the importance of knowing the technique and being able to give CPR.  He also wanted us to konw that in the absence of inhalers, steam is quite effective at opening up the airways until help arrives.  Two things that he said have stood out for me and I don't think will leave me;

Never turn your back on asthma or neglect any medication

The illness can take your life just like that

Other members have responded to his post, we are all sending him love and support to him and his family.  Everyone is shocked and saddened.  There are other posts being added now to the thread of others who have too lost their children.  These children are all different ages, the youngest at the moment being just two years old.  The mother just nipped out to the shops and whilst she was gone, her precious child had an asthma attack and it took his life.  How that little one's dad who was looking after him at the time watched his baby struggle and how they come to terms with such a loss is beyond me, it hurts my heart.

Its unimaginable.  You see when the monster is asleep and all is quiet, you almost forget it is there.

We have had a lovely day.  We have spent three hours on Cannock Chase getting slightly lost over hills, paths and stepping stones.  Charlie has walked or ran most of the way.  We did have to carry him a mile back to the car as he decided the stepping stones was far to boring to use to cross the stream and paddling through instead, he was soaked!  I watch him constantly when we are out, I imagine his lungs getting stronger with every step he takes.  We are so lucky that his asthma is not induced through exercise or allergies.  Charlie has viral induced asthma and as he is well right now, he is like any other crazy three year old loving the outdoors and loving life.  We have his inhaler with us at all times of course but I never expect to use it when he is well, I am just thankful that he loves the outdoors and fresh air as much as he does and is able to enjoy it.

There are different levels of asthma - chronic, brittle, mild, moderate, I don't know them all or the medical terms used to describe them......and parents with more than one child suffering.  One lady on our support group has five children, all with asthma.  My nerves barely hold up when Charlie begins an exacerbation, I can not even begin to think how you keep five children safe from this condition but she does, she fights every day for her chidren's breath.  There are so many people doing the same.  A friend put me in touch with another of her friends whose two year old is suffering in a similar way to Charlie.  She wanted me to reach out to offer some support which I did straight away knowing the fear and helplessness a parent can feel.  I had so much to tell her, I typed and retyped my message so many times because of how much we have learned on our journey, I didn't want to bombard her with information.  In the end, I let her ask the questions and told her about our experience urging her to record and learn about her own childs patterns because everyone suffers differently.

I did think today whilst we were walking that I had beginning to feel that the asthma was behind us.  The sun was warm, the place we were in was beautiful, Charlie was running around and our little family were happy and carefree.  I then reprimanded myself and reminded myself that we had been here before, where I believed Charlie to be well and less than a fortnight later, we were in hospital with a nebuliser mask on his pale face.  Never turn your back on asthma.  I understand this, perhaps not as poignantly as those who have watched their children literally fight for their lives, but I do and I am grateful that each time this monster has reared its ugliness, we have had time to keep Charlie safe.

My heart goes out to this father today and any other parent who have experienced the unthinkable.  My tears belong to these brave people today, I feel numb for them all.

Mummy's Turn

16.05.17

I am so pleased to say that Charlie's sniffle has not turned into anything.  He is still a little blocked up but his asthma is quiet.  We have been doing some fun breathing exercises where we breathe in for a count (four because Charlie is nearly four, he chose that number!) hold our breath for a count and then slowly exhale.  We don't make him do these but we are happy to encourage the exercises when he is game!  Another one we do is where we all hold our imaginary balloons in our hands, take in a deep breath and slowly blow them up opening our hands out as the balloon gets bigger and bigger.  I have definately noticed an improvement in Charlie's inhaler technique since doing these exercises.  He used to pant through the spacer and I was constantly telling him to slow down, now he takes slow deep breaths and doesn't let any of the vapour escape, I am sure he is getting a much better dose.

Another thing we have been doing is getting plenty of exercise as a family.  I knew exercise was an element we needed to focus on more but I let life, work, clubs, money and tiredness get in the way.  The last couple of weeks we have scrambled up Thorpe Cloud, walked around Cannock Chase, gone for local walks around our village and this weekend we went to Chase Water.  Charlie is well at the moment and all of this exercise is not only benefitting him because it is increasing his lung capacity, it is benefitting all of us.  My eldest son has just finished his sats and is one of the worlds deeper thinkers, the fresh air and family time away from his computer screen (where his genius takes flight) has really helped relaxed him.  Our daughter is carefree and funloving by nature so she is in her element climbing trees, paddling and exploring and my husband and I have gotten to spend some time in the same vicinity without having to separate bored children.  Long may this continue!

However, I have been feeling extremely tired for the last few weeks, hardly surprising working nights, looking after our children and dealing with Charlie's asthma.  This tiredness has been a little more overwhelming than my usual energy levels and I haven't been bouncing back - to be honest, I look forward to sleep more than anything at the moment!  I discovered a lump under my armpit which I wasn't overly worried about as I get swollen glands and cysts from time to time but this one has been increasingly painful and a course of antibiotics hasn't really helped.  I have had it checked and it is nothing to worry about in the sense that you would when you say, "lump" but I do need a blood test this afternoon to decipher if there is an underlying course for my glands to be up in my neck and my armpit.  The Doctor wants to rule out glandular fever, diabetes, anaemia and an underactive thyroid.

Me being me, I have researched all of above and have decided I have anaemia which is good because it can be fixed relatively easily and probably through diet alone.  I do roughly fit into the other conditions but anaemia got the most bingo points on the list of symptoms.  Anyway, I have told Charlie that we need to visit the nurse this afternoon, this time for Mummy as I need bloods taken and he said, "Mummy, it will hurt you a little bit but you won't cry because I am going to hold your hand!"  He is three years old.  My children never stop surprising me or making me smile.  I am so sorry that Charlie has had life experiences enough to be able to part with this wisdom but am so proud of him that he has the compassion to care, I think this is reflective of how he has been looked after by everyone involved in his asthma journey and it warms my heart. xx

Another Cold...

 12.05.17

I feel grouchy today.  I worked a night shift last night and have not slept due to being harrassed by phone calls from plumbers who want to arrange to fix my bathroom taps.  I also have an infection either in a gland or a cyst under my arm which I have just collected antibiotics for.  I have a headache, I am in pain and feel slightly sick but all this is nothing compared to the feeling I have about Charlie, who has picked up another cold just from being at school this week.  He is very tired, has rosy red cheeks and is sneezing for England.  It is now just a matter of time before before his body reacts and his airways start to become inflamed and fill up with mucas restricting his breathing.

Tonsillitis is re-doing the rounds at school and nursery.  So many children are coming down with it which made me react with surprise when someone in the childcare profession said to me that it wasn't contagious.  This I disagree with, based sheerly on the way this virus is spreading but I had to google it to be sure and this is what I found out;

"Most acute infections of the tonsils are due to viruses or bacteria and usually is contagious by direct person-to-person contact. Tonsillitis caused by a virus infection usually is contagious for about 7-10 days. Bacterial tonsillitis can remain contagious for about two weeks."

Yup, its contagious and yes, children are still going into school with it and mixing with others.  I have decided that when Charlie picks up a virus I am going to put some sort of early warning system in place with his teachers.  Bearing in mind that he is now off the montelukast tablets, which may have been offering him a layer of protection, I consider him to be quite vulnerable this time round.  I do not know quite how to word it to his teachers or how to represent the fact that once Charlie has a virus it is only a matter of time before his lungs flare up, this is a fact, the only thing we do not know is how bad the flare will be.

I also think we need to be addressing how easily these viruses are spreading through the children at school.  I know the schools host hand washing technique days which is a fantastic start but I feel there needs to be more in place to try and stop these things spreading, not just because Charlie has asthma but for all of the children in general. Its good to get germs so that your immune system builds up but its not good if you have asthma because your body overreacts and then compromises your health, sometimes with tragic consequences.

I don't want this waiting game for my little boy.  I don't want the sinking feeling every time he shows signs of a cold.  I don't want him to struggle for his breath or for me to look at him on high alert, counting his breaths, listening for a wheeze, asking him constantly if his breathing is okay.  I don't want him to be ill.  I don't want this cycle to begin again because it has only just ended.

 

11.05.17

Charlie has been back at nursery since Monday.  He was due to go back last week but had a bit of a funny turn on me on Thursday at 11am.  He had been off his ventolin for over 36 hours but suddenly went really pale and started breathing really fast.  I gave him four puffs of his reliever and it helped him immediately so I booked us in to the Doctors for that evening.  We saw our own Doctor and I will be honest, I felt a fraud because by this time, Charlie was racing around with no symptoms of asthma whatsoever.  Our Doctor listened to his chest and confirmed he was wheeze free but decided to prescribe us a course of prednisolone to keep in our fridge as rescue meds, should his asthma flare up again over a weekend or a bank holiday.  She has also put this on a repeat prescription, so we will always have resue medication in the house and I am grateful for this.  Don't get me wrong, I am not allowed to just administer steroids whenever I deem fit - I have to contact our GP's or out of hours Doctors and get the go ahead based on my account of Charlie's symptoms at the time.

Charlie has his last montelukast tablet on Tuesday night.  It was supposed to be yesterday evening but he fell asleep so early and I didn't want to wake him up.  I did say as soon as he was out of the woods on this recent flare, we would stop the montelukast as our consultant suggested at the appointment three weeks or so back.  I don't know what I was expecting but so far, Charlie has been fine.  I gather it will take a couple of days to work out of his system completely but I am genuinely not expecting any strange things to happen.  I was petrified at one point that I was taking away a level of protection from him but given that his blood tests has shown negative for allergies, I am not so frightened now especially since we have increased his preventer inhaler and this has now been established.  We have also been working on Charlie's inhaler technique so that he breathes better during administration and therefore gets a better dose.

Over the weekend we have also done some wonderful family trips out.  On Saturday we climbed Thorpe Cloud in Dovedale near Ashbourne.  It stands at 970ft and the path we chose was not the easiest one though we didn't realise this until we were half way up!  Charlie scrambled up to the summit by himself, I had expected to have to carry him but his breath held and even though we rested three times as a family, he did it and I was so proud.  He hasn't stopped talking about it since, although he is referring to Thorpe Cloud as Mount Everest!  On Sunday we explored part of Cannock Chase in Staffordshire.  Again Charlie ran around, climbed trees and played on the park with no asthma related issues, even though we always carry his inhaler bag anyway.  The idea is that we want to spend some time as a family, away from stress and worry.  We don't want to spend lots of money and we want to be fitter as a whole.  This walking and exploring should in theory increase Charlie's lung capacity, making him stronger and the healthier you are, the better your immune system.

I am working this weekend in part but am hoping to get out of bed early on Sunday to go and explore Chase Water, an area of beauty near Burntwood, again Staffordshire.  A friend of mine went for the first time last weekend and posted lots of pictures on facebook which we showed our children and we have all voted to go and spend time by the water.  I really look forward to these family trips out, they really relax me and I love watching my children relax.  More than anything, I love seeing Charlie running around with his rosy red cheeks enjoying himself, playing with his older brother and sister and being the gorgeous, cheeky little three year old that he is.

I have read some interesting things about asthma this week.  They are beginning to understand what causes the attacks and believe that there are drugs already in use for other conditions that may help people suffering from asthma.  Its early days for the new research but the fact that they are researching it and coming to a better understanding is wonderful.  It means that hopefully in the future, having asthma will not just be about trying to control it and surviving the attacks, it will mean stopping it before it starts.  If Charlie doesn't grow out of this, which is still my number one hope, it helps me to think that the threat of asthma will be reduced because of research.  

Speaking of Charlie - its time to fetch him from nursery.  Today is cousin day so we are off to visit his cousins to play in the sunshine - my favourite day of the week!

WORLD ASTHMA DAY

EDUCATE TO RAISE AWARENESS

02.05.17

We have been back to hospital this weekend with Charlie, this time to the urgent care centre where he was given a nebuliser and a course of prednisolone for a general wheeze - the noisiest I have ever heard his little lungs.  Today is World Asthma Day and I so desperately want to help raise awareness.  I posted this on my Facebook page earlier this morning:-

 

IT IS WORLD ASTHMA AWARENESS DAY -

Right now my little boy is on day four of a flare up. We are pumping him with four puffs of clenil modulite morning and night, 6-8 puffs of ventolin every four hours, montelukast tablets once a day and prednisolone steroids once a day JUST to prevent a full blown attack and hospitalization.

He looks well because his medicine makes him hyper but he can't run across the playground without dissolving into a coughing fit. He is experiencing the shakes and increased heart rate from the ventolin not to mention missing his friends at nursery.

I am at my mum's house because I feel safer being around people who understand incase things deteriorate because this scares me every time it happens. Charlie is gradually improving, he will turn the corner and we will try lots of other things to prevent another flare up in the future even though we know it is uncontrollable.

Today is about awareness in a World that doesn't really take this condition very seriously because it is so common. I am not asking you to donate anything, I just ask if you know someone with asthma, please educate yourself on how you can help them should they need it - if one person learns this today, awareness has increased xxx Love Em and Charlie xxx

Humbled

 26.04.17

I worked a night shift last night and during my break, I browsed Facebook and an asthma support group that I have recently joined.  There are parents from all over the world on this group and it is starkly apparent how common asthma in children is and how frightening this condition can be.  I came across a video of a little baby called Blake who was in dreadful respiratory distress on an intensive care unit somewhere in America.

At first I was a little taken aback that his distress was being filmed but as I read the comments and the back story, it became painfully clear why.  The film was for awareness. This tiny little bub has been poorly from birth.  His Nanna is watching him in hospital praying for his breathing to settle whilst his Mamma is off at work trying desperately to cover medical expenses that are spiralling way beyond this families affordability.  

Nothing is working for this little tot.  He is not responding to any of the usual medications and he is facing specialist research care to attempt to find out what is causing his breathing problems.  His family have set up a GoFundMe page to try and cover the costs of his transfer, flights, medication and treatment.  I couldn't watch all of the video, it was too much for me to watch this beautiful littlebaby struggle for every breath, his tiny body being pulled in all directions as he desperately tried to suck in his air.

I have messaged his family since and unfortunately his night was like a "rollercoaster" and he is still struggling.  They have been on the unit for a week already.  It has brought back a lot of emotion that I thought I had successfully burried.  I am so tearful at the moment.  I can not imagine how this family are feeling and countless others who at this time are watching their children hopelessly as they try to do what we all take for granted.  I have thought about last November when I held Charlie in my arms, his little body limp from exhaustion of his own breathing struggle and his eyes begging me to take it all way.  I remember crying into his hair thinking that his body was failing him and holding him so so tight because I thought that he could be taken away.  That was the most severe attack Charlie has had and it wasn't severe enough to put him in intensive care, it could have been so much worse.

I am crying now.  He is sat near me watching Super Mario on my Youtube!  My little man is so beautiful! -  I am so lucky.  He is getting stronger, we have found a path that by the grace of life seems to be working for him and his condition.  My anxiety and nerves had settled but these support groups are a reminder that asthma only ever really goes quiet, it is a constant battle to try and control this monster.  We are so lucky that we live in a country that provides us FREE medical care as and when we need it.   Our NHS is a gift.  If I ever won the lottery, I would fly out to America, find this mum and cover all of her costs and more, not only to ease her financial stress but to give her the freedom to hold her tiny boy and savour every moment she has with him,for him to have the comfort of his Mummy -  just in case.

That just in case will never leave me.  It will never leave any parent who has been in a situation where they can not help their child for whatever reason.  This journey was once just about us, it is primarliy about keeping Charlie safe but it is also becoming about spreading awareness of asthma, supporting research into the condition, supporting not only national gold standards of care but international gold standards of care.  It has made me a member of a group of very brave parents and family who struggle every day not only with what this condition does and threatens to do to their children but what it does to us as parents.  The hurt in our hearts, the battles in our minds, the desperation to seek safety in a future we can not see to control.

These things are not only applicable to asthma.  This journey is opening my eyes and expanding my world.  I think that whilst there are still more questions than answers, we have to support each other, share information and try anything possible to move forward in finding better treatments.  The world needs to take asthma more seriously.  Three people per day die from this condition with countless others fighting for their lives. My heart goes out to all of them, their families, their friends and to the medical staff trying to make the difference.

We have been very lucky.  I am so, so grateful for that.

"Thank you for my Easter Egg!" - to the staff at Charlie's Hospital xxx

Fail to Prepare, Prepare to Fail

20.04.17

My sister is always goofing around posting inspirational quotes on social media and generally laughing at the irony of the world.  She turns thirty tomorrow and never fails to make me giggle when she is on form.  One quote that stuck in my head yesterday before we were due to go to Charlie's consultant's appointment was, "Fail to prepare, Prepare to fail."

I didn't fail to prepare.  I wrote down all of Charlie's asthma symptoms, Doctors visits, hospital visits, steroid courses, antibiotic courses, time off school - everything for the last six months.  I was a bit sketchy on details prior to that as "asthma" was only taken seriously enough to treat since November last year.  When you think your baby has had a one off episode of viral wheeze, you tend not to keep the paperwork.  I took his repeat prescription, I rehearsed my concerns about the Montelukast and potential side effects and felt anxious for most of the day.

We got to the hospital and were called through to have Charlie weighed and measured almost immediately.  I was concerned about weight loss when he was so poorly three or so weeks ago but he has actually gained since then which was a relief to me.  We had to wait a little while to see our Doctor but it didn't matter as the waiting area was designed to keep little ones occupied.  Charlie raced around on a Blaze ride on for most of his wait as happy as.  When the Doctor called us in, he got nervous and clung to my leg.  He wouldn't budge until he had his toys with him.

Then the most amazing thing happened.  I was expecting a ten minute follow up appointment.  We got twenty at least.  Doctor Slater was so thorough I wanted to hug her.  All of the questions I had prepared were answered before I had the opportunity to voice them.  I told her of my concerns about the Montelukast causing Charlie's night terrors and disturbed sleep as well as his repetitive leg movements.  I told her of my concerns that school keep the ventolin locked in a medicine cupboard in the medical room and the apparent lack of support for pupils with asthma.  I told her that I wanted to control every aspect of his condition and needed to know what triggers I didn't already know about.  The only thing I didn't need to describe was my anxiety.

Then she answered; Charlie started the Montelukast at a time when his brown preventer inhaler was increased.  Montelukast tends to only work in about 20% of cases and when it does work, its effects are apparent very quickly.  Given that Charlie has had exaccerbations since this time, albeit milder than Novembers attack, Doctor Slater feels that it is in fact his preventer inhaler that has protected him, not the Montelukast.  Also given that Charlie is experiencing side effects from this drug, she was prepared to take him off it.  The plan is that for the next two weeks Charlie is to have an increased dose morning and night of his brown preventer inhaler and once this is established we can stop the Montelukast.  Doctor Slater does not anticipate any problems with Charlie cutting this drug cold turkey.  I am willing to trust her on this despite reading many horror stories to the contrary.

Not only have this medications been re-assessed and altered, Charlie was also offered a blood test there and then to test for other possible allergens such as pollen and how his body is reacting.  Doctor Slater will write to our GP with the results and if pollen is a factor, Charlie can start a dose of antihistermine, however this is not recommended unless it is needed due to it causing tiredness.  The fact that she was holding off ploughing Charlie with more medication until she has a reason made my heart sing.

After leaving Dr Slater, Charlie was taken into a room full of fairy lights to have his blood taken.  The Nurse and HCA that assisted in this were absolutely  wonderful, beyond wonderful infact.  Charlie did not even flinch and was delighted with his Easter Egg that appeared after the task was completed.  I could not thank the staff at the Children's Services unit enough.  I am welling up now as I type.  This is the first time since that awful day in November that I feel we are looking at Charlie's asthma as something as individual as he is rather than treating the universal "asthma."  Please don't misunderstand me, every bit of care Charlie has ever received has been attentitive, caring and effective but it has all been a reaction.  What happened yesterday was that we were able to take a step back and examine the picture we have put together over the last few months and now we have a game plan.

I can not tell you how frightened I have been of this condition taking my little boy away from me.  People do not take asthma seriously.  It is so common.  We think that a persons chest tightens up and they puff away at their inhaler and the day carries on.  This is not what always happens.  The danger asthma poses to a persons life, let alone health is simply not understood.  The only safety net asthma sufferers have is to fully understand their individual condition and use the universal knowledge to control it.  I am very emotional today but not with despair or fear, with gratitude.  I feel safer, I believe my little boy is safer.

Consultant Appointment?

19.04.17

Today is the day.  It has arrived and this afternoon we will speaking to Dr Slater about Charlie's asthma.  I am trying to keep a lid on all the nervous energy I am feeling.  I know that Dr Slater is not going to turn around and say, "congratulations, he no longer has asthma!  Just look at the last couple of years as an unfortunate blip," though that is all I want to hear.  Back to reality and I am trying to pre-empt the conversation in my mind, running different scripts over and over to get the most out of the appointment.

I need to speak slowly and clearly - the one time we were in A&E, the Doctor spent all of three minutes with us and then went outside to take the micky out of our "yam-yam" accent to the nurse at the desk.  He said Charlie had a simple viral wheeze when he was actually having an asthma attack.  I felt guilty of course, despite being educated, despite both my husband and I working, despite many things, I was judged on my accent and my child didn't get the best care he deserved.  I will be putting on my telephone voice today!

I want to know if Charlie can be allergy tested.  He is sniffing constantly at the moment so we are certain that he has sensitivities to pollen.  I want to know if he can have anti-histermines on tip of all the other stuff we give him daily.  I want to know if he has sensitivities to the cat, to dairy, to dustmites and the other hundreds of things that could contribute to his asthma flaring up.  My mind is racing with what if's and what next?

Logically I know that now we are having warmer weather, Charlie will be safer.  He will grow more over this summer and hopefully his lungs will get stronger and stronger.  As his Mummy, I am already feeling panic over the Winter months even though they seem so far away.  I already know a lot of Charlie's triggers and we have already put so much in place to protect him.  I think that today's appointment may encourage us or leave us confused.  The letter states it is for Children's Services Clinic - it doesn't state respiratory and it is for a different Doctor, so in the back of my mind I am worried this appointment is just a follow up.

The only way we are going to know for sure is to go.   

13.04.17

The Easter Holidays are in full swing and we are all (hopefully) over this virus.  I can not believe how time flies, what with work and our everyday routine, I haven't had chance to blog.  Thankfully, there isn't much to blog about regarding Charlie's asthma, it is so quiet at the moment and that's the way that we like it.  We have had a letter confirming an appointment at the hopsital with the consultant for Charlie, it isn't the hospital we expected, its the other one but we have decided to attend anyway as Charlie has been treated at this hospital more.  Worse case scenario, we will be discharged from their care and moved to the other hospital whose appointment is available in August.

I have decided to take with me a summary of my calander because it charts all of Charlie's symptoms, Doctors visits, medications and attacks.  I am also going to talk about Montelukast, the daily medication Charlie has been taking since November.  This drug has some very bad press with regards to its potential side effects.  Charlie has definately had disturbed sleep and night terrors since being on this drug and if I wanted to,  I could also document separation anxiety, aggression and loss of appetite.  However, I am mindful that my little man is only three and a half and these things tend to come with the package.  Unless I can prove these things are actual side effects, I can't necessarily complain about them.

There is one thing that Charlie has been doing though which is unusual.  He has had a surplus of energy which is coming out as leg twitching or repetitive leg movements, even when he is falling asleep one of his legs will be swinging side to side like the pendulum of a clock.  If its not his legs, its his hands taking apart lego and re-building it at quick speeds just to take it apart again!  He has always moved at a million miles per hour, he is a live wire just like his big sister - this is just a new behaviour.  Maybe its connected to the medication or maybe its just Charlie and I need to get him out more!  I will be asking the consultant what he knows about this medication.  I am sure of two things, one is that Charlie's asthma has been a lot calmer since he has been on it and that is worth its weight in gold to me but also two, I am concerned about the long term effects on him physically and/or mentally.  Its up for discussion anyway.

Other than that the only other worry we have at the moment is how my sick days when Charlie has been poorly has now hit the bank balance as I work on a zero hours contract in health and social care.  The missing wages have really made a mark on us this month and will for the next two months I imagine as we catch up and deal with all the increasing bills - everything is increasing at the moment!  I am currently sorting out all the things we don't need to either give away or sell.  We are determined to take the children on holiday in July as their joint birthday presents (all birthdays within four weeks of each other!) and have booked a private caravan in the UK for one week - yet to be paid for in full.

I am picking up as many night shifts as I can physically manage to get us back on track and this has unfortunately left me extremely tired and grumpy.  Instead of shouting today, every time one of the children act up in anyway to me or each other, I have tickled them which has left us all in fits of giggles - the way life should be!

LABELLING

01.04.17

A quick add for my fight against asthma defining us.  I am about to fly in the face of that but I promise you, I have my reasons.  I normally can not stand labelling, however after consideration I have decided, if it aids in prevention and assists in effective treatment thus promoting safety, I believe a little bit of knowledge can go a long way.

I hope this NEVER happens.  BUT, should Charlie begin to struggle, say at a Birthday party, a club,  at school, wherever it may be and I am not there to provide his history and vital information - I want whoever helps him to have the heads up.

We should know who has this condition.  We should be taking asthma a little more seriously.  We should all know the appropriate action to take at the appropriate time.  A visual aid is much easier to spot than asking someone with asthma symptoms to explain.

After a very supportive chat on facebook with friends and family, I have decided that little Cho can have a medical identity bracelet just to alert anyone who needs it to his condition. I have found a really fun, child appropriate one from www.theidbandco.com which I have ordered this afternoon.

I think he will be very happy to wear it.  

The Things That Get Missed

01.04.17

It is all too easy to get caught up on one subject.  It is all too easy to become completely distracted by something that other things around you, important things get missed.  This week has been yet another learning curve for me, as a Mother, as a student of asthma and as an individual.

Charlie has been poorly for two and a half weeks now.  When we first took him to A&E, I warned the Doctor about his asthma.  The Doctor did everything that he could regarding the condition to keep my little man safe and for that I am very grateful.  The second Doctor on his check up a day later also regarded his asthma as the most important thing to control.  There was a wheeze on his chest, it was irritated, we needed to keep up the meds, the steroids, the vigilance.  We were part of a team to keep him safe and I was and still am grateful for that support.

Fast forward nearly a week later when Charlie's cough was getting consistently worse and yet his previous symptoms of asthma attack were nowhere to be seen.  Fast forward nearly a week later when Charlie was spending most of his time coughing during his waking hours that we went back to the Doctors.  Otherwise, Charlie was full of beans, he was at his cheeky best,  trying to run around and play like a three year old should only finding this was being extremely detrimental to his breathing.  So active was he,  it was difficult to convince the Locum at our GP's that he was infact ill at all.

However, Dr Anwar listened to his history.  He then proceded to check Charlie over thoroughly.  It was like the asthma was put on the back burner.  It was almost like the Doctor hadn't got the same blinkers on that I feel I have been wearing.  Then he did one simple thing that changed Charlie's outcome - he checked the back of our little guys throat.  Charlie has not had an asthma attack.  His asthma has been aggrevated for sure but the reason he is has been so poorly is because he has an upper respiratory tract infection that needed anti biotics.  We had unwittingly masked the temperature that would have alerted us to infection because we were giving Charlie children's ibroprofen as an anti inflammatory to try and calm his asthma a long with all his other medications.

Within two doses of his favourite banana medicine - (Amoxicillin for us adults) and he bounced back with absolute certainty!  The Doctor checked his throat.  The other thing the Doctor did was give me extra support by referring Charlie to the Paediactric Community Nurses who have been calling us regularly to monitor his asthma whilst he is ill.  They have an oxygen sats machine with them and are able to come out any time in the day up until 10pm to sound his chest if I am worried.  They will look after us for another week until his symptoms have cleared and if we have another flare up in the future, we will be re-referred to their care.  It has been like having a safety net, a truely kind and supportive safety net.  The Doctor also invited us back for an evening appointment to double check Charlie's observations to make sure his asthma was under control.  We are blessed to have such an amazing Doctors surgery in our village.

So Charlie is on the mend again and I have been left considering how important it is not to miss the little things.  I was again reminded of this on Wednesday night last week when my beautiful eight year old daughter burst into tears on the way home from school.  Concerned I asked her to talk to me.  One of her close friends had been running around on the playground, being chased by a group of boys.  Her friend had needed to sit down with Emily and eventually had needed her ventolin inhaler.  Emily did not know that her friend was asthmatic.  Emily told me how she wanted the boys to stop chasing her friend because her friend was breathless and was unable to talk in a full sentance - all things we have taught our two oldest children to look out for in Charlie so that they know when to calm him down and fetch us if needed.

What I didn't teach Emily was that, in Charlie's words, "we can handle this, we got this."  Emily is scared of asthma.  That crippling fear that I have felt and still feel from time to time is also affecting my amazing little girl and after all these months, we have never sat down to talk about it.  Emily has been so frightened each time her little brother has been taken poorly, she is so fatiqued by this battle with his asthma and despite me telling her that things will be okay, she has obviously been affected by the manic moments.  We have had ambulances at our house, we have been whisked away to hospital and whilst our two oldest children have been safe at Grandma's and Grandad's, they have never truely seen what has been happening.  Emily thinks asthma will take her little brother away, she thought on that day that it would take her friend away.

I sat down with her.  I held her and stroked her hair.  I explained to her that asthma is controllable.  Yes, it can be dangerous.  Yes, people die because of what it can do BUT we don't go to the Doctors or to the hospital because we think that is the outcome, we go to get better medicine, we go to get stronger more quickly.  I praised her for helping her friend.  We text the friends Mother who was taken aback by Emily's care and attention and assured us that her daughter was absolutely fine, Emily's smile when I showed her the message metled away her anxiety in front of me.  Emily was thanked for being a good friend.  She was told in future, if she is worried about her friend, she can always ask, "do you need a rest?  Do you need your inhaler?  Would you like me to get help?"   Emily has been coached on how to approach asthma calmly - something I have needed coaching on since November, something I am only just about grasping.

Why on earth did I not think to talk to my other children?  Its not like we havent' said anything to them at all.  We have always had quality family time after Charlie has arrived home, we have always had a treat, being a film night or a take away.  We have always explained that Charlie's manic behaviour is often down to his medications - though it dawned on me that Emily is often the brunt of Charlie's hyper activity as he absolutely worships her!  She has seen massive changes in her little brother and probably massive changes in me when it comes to asthma.  Yet again, this condition has managed to make itself the focus and the little things have been missed.

Not anymore.  It has taken a part of me.  It has changed the landscape for all of us, Charlie most noticeably in the physical sense, but all of us emotionally.  However, it is not going to define him.  It is not going to dictate my daughters emotions.  It is not going to affect every single one of us negatively.  Moving forward, we are not living every day waiting for the next flare up, we are going to start living, taking care of the smaller things.

Learning To Live With It

25.03.17

I haven't blogged for a while.  The truth is I haven't wanted to blog.  A lot has happened with Charlie's asthma and I have had a lot of different reactions and emotions which have left me feeling a little detached and well, a bit numb.  I was about to blog about these things when our little man became again plagued by asthma, so really haven't been able to get round to it, though I will eventually.

As we are at the moment, Charlie is on Prednisolone, eight puffs of ventolin every four hours, Montelukast, Clenil Modulite and eye drops because he has conjunctivitis in both of his eyes.  All this because of a virus that he has had for a couple of weeks that exacerbated his asthma landing us in A&E on Wednesday last week.  He had a chest x-ray which was "not too bad" and his chest sounded, picking up a wheeze in his lower left lobe, though not any sounds to indicate infection.  He still had the wheeze Thursday when we went to the Doctors for the 24 hour after check but still no signs of infection.

As with some of the other attacks, we suspected it may happen.  We had already started to give Charlie four puffs of ventolin every four hours on Tuesday.  In the early hours of Wednesday morning, at 4.30am, Charlie came into our room and was really struggling.  His breathing rate was fast and noisy.  I gave him four puffs of ventolin and this made no difference.  I gave him another four puffs of ventolin and this reduced his breathing rate by two counts in the minute.  Two more puffs and Charlie half settled though he was moaning in his sleep.  I didn't panic but obviously I was worried.  I have seen Charlie a lot worse than this but I knew that the ventolin should have been more effective. 

My husband was really supportive.  I am not saying that he hasn't been before but instead of asking me one hundred questions about Charlies breathing rate, whether or not he was having an attack, whether or not we should call a Doctor etc he stayed calm.  I said to him, "we need to take him in don't we?" and he replied, "yes, we do."  My husband then got up and started making lunches for the other two children whilst I got washed and dressed quickly.  Charlie was asleep at this point and his breathing rate had settled a bit more, so we weren't in an emergency situation.  I already had a hospital bag packed, I tend to do that now, just in case.  We just had to get everyone up, let my Mum know because she and my Dad look after our two older children in this situation and get ourselves to A&E.

 On the way to the hospital in the car, Charlie held my hand for the entire journey, stroking my fingers and tracing the shape of my nails.  Charlie is a little fire cracker, he loves his cuddles but he chooses when and where, you can't just pull him in for one.  He is that child that wipes your kisses off his face with a cheeky grin on his.  In the car he was quiet, I think he felt tired, not because his asthma was making him tired, more that it was happening all over again.  I was quiet too, its strange to have an expectation of a routine because you have done something a fair few times even though what you are dealing with is so unpredicatable.

The consultant recognised us from over a year and a half ago.  We had taken Charlie to A&E then with what turned out to be a chest infection.  He was breathing so fast and his temperature was spiking far too high.  I remember him having a febrile convulsion on the bed in a cubicle where we had been for hours.  This consultant could be heard giving a staff member a tatering about leaving a child struggling for breath in a cubicle whilst seeing to a man with a bad back.  Chris heard him say, "you can not die from a bad back but you can die if you can't breathe!"  I can not say I recognised him but I did find his manner familiar.  He ordered a chest x-ray this time which no one else has ever done,  he wanted to check that Charlie hadn't plugged off with mucas.  Once all checks were done, he was happy for us to treat Charlie at home, which is what we have been doing.

Since A&E, Charlie has been coughing, he looks pale, he wants to play like a normal three year old but forgets that running around is going to cause a coughing fit that floors him. He is two days behind his Prednisolone course because he spat the first two doses back out - one in the nurses face at the hospital and one in mine at home the following day. Unbelievably, they do this medicine in VANILLA flavour also - thanks to our GP, we now have a bottle of it in the fridge and Charlie loves it because it tastes of ice cream.  I am now expecting a speedy recovery.  The steroids are definately in his system, Charlie has gone from not eating at all for the best part of the week to rubbing his tummy constantly saying he is hungry!

This is something all parents of a child with asthma should know:  If needed, ASK FOR THE LIQUID VANILLA FLAVOUR PREDNISOLONE - you will thank us for the knowledge!

The biggest thing that has happened during this attack is that I chose to work Thursday night.  Knowing that Charlie did not have an infection on board and knowing that he had the maximum protection with his medications, I made the rational decision to go to work.  I was confident in this until about 7pm, two and a half hours before I was due to leave.  My Mum phoned me and I got very emotional.  I felt and still do that if something happens to Charlie when I am not here, it will be my fault.

 My mum reassured me, we put a plan in place if Charlie was to "go off" - Chris would carry him downstairs, he would give him ventolin whilst calling 999 and our eldest, Tom would call my Mum and then me.  I went to work and I was a nervous wreck for most of the night, my phone alarm going off every four hours so that I could stand staring at the screen waiting for my husband to text to say medicines given, all okay.  Another night done holding it back and whilst I wasn't there, it was another night done.

 I am working again tonight and Charlie is still unwell.  He is ten times better than he was though.  I still don't want to leave him but we can not afford for me not to earn a wage, its hurting us in other ways when I don't work.  I need to distinguish between him being unwell but controlled and him being really ill.  The truth is, if the bank balance was healthier, I wouldn't work at all and I would give all of me to my beautiful children, I think I now realise though that asthma doesn't care if I work or not, it doesn't care if we have made plans to visit family or go to a Birthday party, it doesn't care that Charlie is only three and wants to explore, learn and play - it doesn't plan these attacks, they just happen as the fates align so we have to learn to live with it, making small allowances and changing our plans to keep Charlie safe.  

 

09.03.17

I have about five minutes to type this because the school run is looming.  Charlie has been invited along with his sister to a Wacky Warehouse birthday party after school.  It will last for a couple of hours.  They are both very excited, we have wrapped the present, signed the card and picked out our outfits.

Every time Charlie has stepped foot into a Wacky Warehouse in recent memory, he has ended up in hospital within a week with asthma.  Coincidental maybe or just the fact that these places breed germs.  Sure, they are a lot of fun and we have hosted parties at them ourselves - the only thing I decline to do is the tunnel slides - they have so much static!  I am game for pretty much anything else, Charlie and me particularly like the ball pits.  That said, Charlie is at risk each time he picks up a virus so they tend not to be the best places for us to take him.

However, I have looked in the mirror today and told myself to, "get over it!"  I don't know why I said these particular words, I could have said, "you've got this!" or "he'll be fine!" but I had to tell myself off.  The point being that I want Charlie to celebrate his friends birthday.  His friends parents, my friends have been kind enough to invite us along and I think it is important that Charlie get to join in.  Yes, he may very well pick up some germs that cause a virus and yes, that may very well lead to him having aggrevated asthma.  However, this is just a risk and I can not stop him being a three year old.

He went back to school this morning after his couple of days at home.  He didn't want to go.  He told me that if his cousin, Evie wasn't there, no one would play with him.  It hit me like a brick.  He has had a lot of time off nursery because of his asthma.  I have been so focussed on his asthma and keeping him away from potential illnesses that I have missed the bigger picture.  My little boy is just that, a little boy.  He wants to play, cause havoc (which he is an absolutely expert in doing by the way) and explore.  Why am I stopping him?

So, we are off to the party.  I will be duck like - calm on the surface and paddling furiously underneath but never the less, we are going.  I will have the inhaler bag, a fully charged phone and enough money for a strong cup of tea.  We are wearing matching socks (only on special occassions this!) and have no toes peeking out of holes.  We are ready.  Charlie is going to play.

Stunned Silence

08.03.17

Yesterday was stressful, only it didn't make me cry or become snappy or get angry.  I ended up sitting on our sofa in stunned silence.  I am not sure if that was because I felt defeated, utterly stupid or whether I was on the verge of laughing about it all.  It felt like my whole body had just decided to refuse to move and my brain just went blank. 

It started when I came to give Charlie his Montelukast.  The packaging is ordered and labelled in the days of the week to help you keep track of where you are.  I administer medication as part of my job and to date have never made a medication error because I am that careful.  Yesterday however, I gave Charlie his tablet, came to put the blister pack away and noticed that Tuesdays tablet was still in tact, in the packaging. It threw me like nothing has ever thrown me before.  I convinced myself that we had missed a dose in the week, I say we because I had asked my husband to give it Charlie on Monday night due to the timing - it has to be taken one hour before food or two hours after - I was at walking group when Charlie was due the tablet as we had had an early dinner.

I then convinced myself that I had missed the dose and that I was the reason his asthma had flared up over the weekend.  I stood there holding the packaging trying to figure out which day we, I had missed.  None of this was actually that important as I realised later, in the middle of the night when I woke up with a jolt, we start the week on Thursday and still had one tablet left, which would be todays dose, therefore no doses had actually been missed, the wrong days had just been popped out of the package, throwing us out.  What had actually started shutting me down in the day was the missed consultants appointment I discovered that afternoon, I just must have had a delayed reaction triggered by the medication confusion. 

We had a letter from one NHS trust on Monday to inform us that a referral had been received to see Charlie but no appointments were available and they would effectively bear us in mind.  This in itself had made me very angry, you would have to find me on Facebook to appreciate the full rant.  I found Charlies asthma notes to file the letter away and decided to organise the paperwork a bit better into sections, correspondence, hospital discharges, repeat prescriptions etc.  Whilst doing this I found a letter from another NHS trust detailing an appointment with a respiratory consultant; an appointment I had been waiting for since November, an appointment I thought I was still waiting for - and technically we still are except from a different hospital - but this particular one was ours, it was booked and we had missed it because it was for the day before at 9.30am.

That made me cry.  I cry when I am sad, I cry when I am scared and I cry when I am angry.  I was so angry with myself, I can not describe the feeling.  I rang the hospital and apologised prefusely, I explained Charlie had been poorly over the weekend with his asthma and we had been to the out of hours Doctors.  I lied and said that the appointment had slipped my mind with everything going on.  It hadn't slipped my mind, the truth is, I have absolutely no recollection of ever reading this letter, even though I clearly have at some point.  I have an idea that we had an outpatients appointment at this hospital with the asthma nurses at the end of this month, at least thats what I have been telling everybody and no one has ever raised an eyebrow or corrected me only the asthma nurse appointment doesnt exist, it appears I made that up.

That attack in November has done something to my brain.  You can not think or retain information when you are on auto pilot.  You can not plan when you are that frightened and you can not remember when you are that relieved.  We have another appointment at this one hospital in August, we have asked our GP to try and get it moved forward on the secretary's advise, though I would never expect to jump the line, its really only if something is available.  As for the other trust, I need to inform them that we are under consultant now at a different hospital. 

The funny thing is, these two hospitals are about eleven miles apart but work on different administrative systems.  Ironically the hospital that is offering us an appointment doesnt have a 24 hour A&E anymore, our Doctor has referred us to there, the hospital we have been waiting for an appointment from does have an A&E, we know this because Charlie was taken there by ambulance in November last year.

Stunned silence.

"...don't usually do this for asthma."

06.03.17

I had a really productive chat this morning at the school office.  I had to go in as Charlie is taking a couple of days off due to a cold he, without a doubt, picked up from nursery last week when his classmate ran up to him and coughed full on in his face.  In fairness his mum did say, "hand to your mouth" but it was too late and I remember standing there fuming, not at the little boy but at his mum.  In that moment, her lad, with snot smeared up his face, eyes watering and chesty cough had given my lad his germs and probably an asthma attack in the making.  Obviously, I don't feel like that now, it was in the moment, that is what constant worry does to you, it makes you defensive and a little snappy.  Luckily I know better than to open my mouth in these moments. 

It is one of those things, our children go to nursery and school and are exposed to all sorts of germs, we can't keep our children off school the second they start to cough - well, with the exception of Charlie because he is off.  I am not keeping him off school just for a cough of course, he has had to have ventolin since Friday to calm down his breathing rate that has been steadily increasing since the symptoms of this virus came out.  At first two puffs when he needed it was enough but by Sunday morning he was on six puffs, four hourly and we had booked an appointment through 111 with the out of hours Doctors. 

Charlie wasn't ill with asthma, he was just breathless and in my head we were holding an attack at bay.  I spoke to my mum, a Sister in respiratory nursing, who said we were actually only helping his airways to be open during a time that his lungs were twitching.  If an attack were going to happen, it could happen at any time and we wouldn't have much control over it at all.  This made me cry - hard.  My mum is my rock, she worries about me and checks up on us a lot when Charlie is unwell.  When my knowledge and reasoning matches hers, I feel confident, when we are on slightly different pages, I get panic like you have never known.  The thought of making the wrong decision, the thought of doing something wrong so that ultimately Charlie gets hurt is a very shadowy place for me.

Anyway, we presented at the out of hours Doctors, waited an hour after our appointment time to be seen and after a quick but thorough check up were told Charlie's chest sounded clear and to keep doing what we were doing.  Charlie didn't need any ventolin in the night but had a coughing fit this morning resulting in four puffs of ventolin.  Since then he has been wonderful, playing,  crafting, eating and being his normal cheeky self.  If he runs about too much his breathing just goes crazy fast.  This is why he is staying home with mummy for a couple of days - to keep him calm until this virus weakens.

In the school office we bumped into the colleague of the school nurse.  She was so helpful and has taken my details to pass on so that we can get it on record that Charlie is having a lot of difficulties with asthma at the moment.  As he starts school in September, I don't want his absences clocking up and social services knocking on my door.  This nurse suggested that if he is absent through asthma, that we get the Doctor to write or ring school so that there is some documentation to support the absence.  I have also been told that as Charlie is not five until 2018, the way the school deal with absences is very different as he is not legally obliged to attend school until this age.

Then she said something that has deeply concerned me.  She suggested that we have a care plan in place for Charlie before adding that they "don't usually do this for asthma."  - WHY?!!!  Why doesn't every child with a diagnosis of asthma have a care plan in place?  They are all given asthma plans and to me it is the schools responsibility to ensure that every member of staff knows about that child's asthma, their triggers, their symptoms and how to treat it as quickly as possible.  Doing a first aid course is simply not enough and I don't think we should be accepting this.  Charlie will be starting school with his asthma plan, his care plan and he will have access to his ventolin immediately as it will be available in the same room as him and not in a medical cupboard.  I will be checking the inhaler techniquies of his teachers and until I am satisfied that his needs are being met, he won't start school, I will quite happily defer him for a year.

I have until July to look at the details of all this, I need to know what I am talking about before I go into the school making demands but demands I will make on behalf of Charlie and every child that has asthma because it needs  to be taken seriously.

26.02.17

Half term is over.  I am working a night shift tonight and the children are all back at school tomorrow.  I was really enjoying the milder weather but it seems to be getting colder again.  I am a little nervous as Charlie is going to participate in Muddy Mondays tomorrow.  He is prepared, he has his snow suit, his fleece hood and will have his inhaler near by but I am anxious, mainly because my Dad has said there are cold winds coming in from the North and it takes a simple comment like that to get me worrying.

My anxiety has been really low key all over half term, probably because Charlie has been with me for most of it.  From Wednesday onwards he started looking a little pale and he coughed here and there.  I noticed at night time before bed and in the morning when he first woke up, he was a little breathless so he has had some ventolin this week.  I have recorded this on our calander in the kitchen for when we get this Consultant's appointment through.  He is well other than these couple of episodes and we even did a family day out to the Space Museum in Leicester on Saturday, which he loved.

At one point, we were sat in the Planetarium watching a film,  being taken deep into space past planets and comets into the vast unknown.  Charlie leaned over and told me that we were "actually in space."  He got a little nervous when it got dark and leaned in again to tell me, "I wish we had gone to the seaside now, I want to go back to Earth!"  All of our children enjoyed exploring and learning as we walked around, Emily and Charlie even attempted to do a weather report in the Weather Hub against the green screen.  Emily read the autocue while Charlie was busy walking in and out of the frame trying to figure out where the background was coming from when he was standing against a blank wall!  Thomas filmed them and couldn't stop giggling.

The museum itself is about one hour and forty minutes drive from where we live.  My husband, Chris was using the TomTom to get us there and he had left the notifications on.  Everytime we were within distance of a speed camera an alarm sounded on the satnav.  I don't know how to describe what happened to me when I heard it.  The notification sounded just like the alarm on the machines that Charlie was hooked up to in the hospital back in November.  The machine was measuring his heart rate and oxygen levels in his blood.  Every time his oxygen levels dropped below 90 the alarm would sound and I would have to hold an oxygen mask near to his face to improve his saturations.  The alarm went off constantly whist we were in hospital as it took fourteen hours of hourly medications to get his oxygen levels to stabilise.  Even when it didn't go off, I was looking at the monitor willing the numbers to increase. 

I vividly remember begging him to breathe more slowly, more deeply, stroking his little head and promising it would be okay without ever feeling remotely in control of the situation.

I heard this alarm from the satnav and it took me right back to feeling helpless.  It was like I was daydreaming and I was back on the assessment unit holding Charlie in my arms before we were given a bed, his little frame limp and heavy against mine and me watching him work so hard to suck in air.  Two nurses and two Doctors were hovering around us placing wires on his chest and probes around his tiny toe. 

My husband asked me in the car if I was okay, I said I was and told him that the alarm sounded like the one on the machines in the hospital and that it was taking me back a bit.  He said the first opportunity he had, he would turn the notifications off.  We were on the motorway so for the time being they had to remain on.  I had said I was okay but I didn't feel it at all.  My eyes were filling up with tears, my chest was getting tight and I felt this aggitation, nervous energy that I couldn't do anything with.  I could hear Charlie singing away so I knew he was well and safe but couldnt convince my brain that was the case. 

Each time there was a speed camera, there was an alarm and a couple of times, I even checked the satnav screen - for what I do not know, it was just a reaction.  The whole thing was just a reaction.  I imagine him looking up at me and asking "help me mummy," and even now as I type, that memory hurts my chest.  I sat in that car thinking how this thing, this asthma could take him away from me and it took me a little while to focus.

Eventually I did though.  I told myself that we are more in control than we were back in November.  I told myself that myself that that attack could have been a whole lot worse and we came through it.  We are still learning, Charlie has had another attack since but it was very mild in comparison.  I told myself that I need this fear to stay with me because it keeps me vigilant, I don't want my guard to drop because whatever the statistics and whatever the chances, that little cheeky chap is one third of the most important, precious things in my life and I love him so much. 

 

Home Sweet Home

22.02.17

It is half term.  To be honest, a part from working night shifts and  existing on very little sleep, I love having the children at home.  I love the break from routine.  I love having Charlie right under my nose and not having to worry about the little things incase they trigger the bigger things.  The only decision I have had to make this week is whether to buy a condenser tumble dryer or a vented one.  Asthma only played a very small part in this decision.

I can not dry clothes on the line in the summer.  I have done, many times because drying the amount of washing a five person family produces is quite a job without a tumble dryer.  However, our oldest boy, Thomas, has very bad hayfever for nearly all of the pollen season, so I try to avoid using nature to dry our clothes.  Charlie also seems to be sensitive to grass pollens and at least one, maybe two of his asthma attacks have happened around the time his eyes were itching.  So, after years of waiting, I have purchased a tumble dryer.

I am a little embarressed to say that I did google what was better for asthmatics - a condenser dryer or a vented one.  Funniy enough, there isn't any advice or research available on this subject.  I figured there might have been some given that temperature and humidity can affect a persons asthma but there isn't and even typing it now makes me feel slightly silly for wondering about it.  I went with a vented tumble dryer - purely on price - it was cheaper.

We don't even have a space for it.  It is kind of abandoned in an awkward corner, far to close to the dining table and it sticks out like a sore thumb.  The kitchen is a little chilly too as the hose is dangling out of the patio doors.  This has annoyed the cat dreadfully.  Speaking of Flib (the children named her) a few people have suggested that Charlie may be allergic to her - the dust off her fur and her hair.  We have banned her from upstairs as much as we can, strategically placed salt lamps in key rooms (though one of the bulbs has just blown so we are one down at the moment) and I vacuum thoroughly and wet wipe all the surfaces as often as I can get around to it.

I am not sure that we are a completely asthma friendly household but I think we have made improvements that logically should be helping Charlie, they certainly are not hurting him.  I just wish I had more suggestions off people reading this blog or could meet more people that have tried other things that I do not know about yet.  I am still looking at nutrition, the children are on daily vitamins and our fruit bowl is very colourful.  The weather is warmer too which has been a massive relief to me because I know for a fact the cold air tipped Charlie into having attacks.

All in all, we are having a little breather, so to speak!  Charlie's jabs were cancelled today because the nurse rang in sick, they have been rearranged for next week.  I was actually geared up for them as Charlie has been so well but it can not be helped.  Emily's friend is here at the moment and they have riled Charlie up something stupid.  He is running around shouting at them through hiccups because he has giggled so much!  I need to calm him down really so will leave it there for today.

Another Nightmare

17.02.17

Last night Charlie woke up crying in the very early hours.  He wasn't awake when I went into his bedroom but he was crying hard.  I comforted him and he just stared at me out of his dream so I scooped him up and took him into my bed where he clung onto me for the rest of night sleeping soundly. A couple of nights ago he woke up shouting my name, "Mummy! Mummy! no Mummy! my Mummy!"

Since early December last year, he has had to my memory six or seven what I would describe as night terrors.  He can not remember much about his vivid dreams but his sleep has been very much disturbed.  Now to my mind, Charlie is either at that age where his imagination is exploding and is therefore prone to having night terrors as some young children are OR something else is contributing.  The only other element that I can link into this is that in early December last year, Charlie started taking Montelukast, asthma medication.

The reason I am linking Montelukast is because the first week he was on these tablets, he had two nights of very badly disturbed sleep where he described a "wobbling sea monster" waiting for him outside that was trying to eat him and me.  He has also had crabs pinching his face with their claws.  We talked about it, drew pictures and made the dreams funny as you do to diminish their power but it did leave me wondering.

After last night, I wondered some more and decided to get googling - which is something someone with very little medical knowledge should avoid doing.  However, what I have read so far is more compelling than I dared to think. 

For example, the European Respiratory Journal stated that sleep disturbances were not described in clinical trials of Montelukast, sometimes referred to as Singulair, which was approved for use back in 1998.  In post marketing though, several cases of adverse psychiatric reactions to the drug, including sleep disturbance, vivid dreams, nightmares, insomnia, hallucinations, aggression and depression have been recorded - more so in children than in adults.

In 18 out of 24 cases, these affects rapidly resolved when the patient was taken off the drug.  Out of these 18 patients, 3 were re-exposed to the medication and the nightmares returned.  53% of children in the study under the age of 5 years were affected by this medication with sleep disturbances or nightmares.  There is an alternative mediciation, zafirlukast which hasn't had these side affects reported but it is not approved for use of children under the age of 12.

On some of the parenting social sites, parents have described their children feeling very sad and having separation anxiety since being on this medication.  Almost all of them say when their child was taken off it, these problems resolved.  Even more worringly, the American literature on this drug has questioned its use at all because of the adverse psychiatric affects on some people who take it.

On balance, there are lots of people who do take it who have had no side affects and this drug has kept them and their children out of hospital where they were frequenting often with asthma attacks.  I remember discovering that Charlie's montelukast was not on repeat prescription and ringing our GP in a blind panic to get some more, so frightened was I that he would have a nasty attack if he came off this drug.  This drug was protecting him. 

I have to tell myself at the moment that even on Montelukast, Charlie has found himself back in hospital so without it he would be seriously at risk of having a severe asthma attack.  I have to tell myself that since early December, he has had a few disturbed nights, however uncomfortable they were and horrible to see, its not every single night he has a nightmare.

However, this reading has raised some important questions for me.  I want to know what the long term affects are likely to be for Charlie on this medication, I want to know why I wasn't aware of these known side affects and I need to know from my GP that these side affects and potential others are a small price to pay for keeping his asthma in check.

Of course, I want him to breathe more than I want him to sleep peacefully.  I just need to know that this is the best route rather than setting him up for psychological and emotional problems later.  I need to know that there will not be long term damage due to us following a course of treatment without considering alternatives because we were too scared of his asthma to even ask.

 

Vaccinations

 15.02.17

It has been a tough couple of days.  I worked Sunday night and had a text off my husband at 2.30am to say Charlie had been sick everywhere but his breathing was okay.  I don't know what expression came across my face but my lovely colleague said, "Calm down."  I rang Chris and asked him to hold the phone against Charlie's mouth so that I could listen to his breathing and my husband was right, it was perfectly fine.

I knew aswell that Charlie had been eating a lot of treats during the day, too many as we went from house to house visiting family.  It didn't stop me making Chris promise to check him every hour and it didn't stop me worrying about him until the end of my shift.  It did stop me sleeping in the day as Charlie could not go to nursery or to his childminders.  I ended up staying awake for thirty six hours.

Charlie was absolutely fine, he wasn't sick again although was quite tired for his usual self.  He has had the mandatory 48 hours off school and went back this morning.  I dropped him off and then promptly rang the Doctors thinking that today was his DPT vaccine.  I will be honest, I support vaccination, being a toddler of whooping cough and just making it, I would rather my children be protected than get the full blown disease.

However, Charlie has asthma.  In my mind, DPT combination vaccine is for largely respiratory illnesses so if I can defer it until Charlie has had a good run of no attacks, I will.  This sickness bug was my get out of jail free card this week except that I don't function well tired.  If I had checked my diary, I would have realised the jabs are scheduled for next Wednesday and I could have saved myself telling the reception our sob story - awkward!

I have thus used the time this morning to research a little about the DPT vaccination.  This combination jab contains no live cultures of diptheria, pertussis (whooping cough) tetanus and polio.  No live cultures mean that Charlie is not going to contract these illnesses and all we need to worry about is a sore arm.  Although I am still a bit sketchy on this because surely his immune system is being introduced to these diseases, therefore his immune system will react and if his immune system chooses to flare up his lungs, we will have triggered the aggrevation that can lead to an attack.

This is my logic, it is not medical knowledge or expertise.  I will be seeking the advice from the nurse before the injection is given.  Vaccinations are important.  The only reason according to the reading I have done that Charlie would have an asthma attack is if he had an allergy to yeast, which he vaccine contains.  Maybe worryingly there seems to be research into how vaccinations given at a very early age can, or rather may contribute to childhood asthmas. 

Again, I am not an expert but I would hope that this is being taken into consideration by our governments and health bodies.  I imagine there may be a risk over loading a tiny body with these diseases but the risk of childhood asthma must be seen as a much better option than our children contracting these devastating diseases.  We have a history of eczema and hay fever in our family, Charlie's asthma is probably genetic.

I still haven't managed to book an appointment with our asthma nurse, not through lack of trying though!  It is half term next week and I am hoping she is the nurse giving the vaccinations, either way, I will get in to see her because I want Charlie's asthma plan updated ready to hand into school.  I think I will use this coming weekend to look at what we have put in place, how it is working and what else we can do so that next week, we can just have lots of fun.

The Need For Control

11.02.17

I don't think I am the easiest person to live with at the moment.  We woke up this morning to freezing temperatures and snow falling.  We needed to drop our daughter Emily off at her drama classes, do the food shopping, pick Emily up and then go to get her some new clothes for school.  My husband was happy to drive us to all of these places but I was getting agitated about taking Charlie out in the cold. 

My husband just couldn't understand why I was stressing and pointed out that I had said earlier if the snow had covered the ground properly, it would have been fantastic to take the kiddies out on the sledge, walking across the village to visit my mum and dad.  He was getting frustrated with me talking about triggers and keeping Charlie safe regarding our Saturday run about when I was so willing to brave the cold to go sledging.  This I can completely understand, I do not make sense even though I do work to a logic.

I then got frustrated with him for not listening to my concerns.  Chris felt Charlie was safer getting in and out of a warm car since he had his fleece ski hood and we had his inhalers than playing out in the snow.  The argument was already pointless as sledging was not even an option given that it wasn't even snowing enough to allow us to do it.

I tried to explain that if Charlie's lungs got twitchy, going from cold air, to warm air, to cold air to warm air could trigger an asthma attack but he felt I was just being over protective, maybe borderline mental, though he didn't say this.  The truth is I probably am.  In fact, I am nuts.  Not only that, I am exhausted  I am not sleeping, or eating properly.  I am just stressing constantly. 

If we went out on the sledge, Charlie would be sat on it.  He would have all his warm gear on including his fleece ski hood, a scarf and a hot water bottle.  We would go to my mum and dads where we would warm up slowly over a period of time and then brave the cold back in the same way as when we left.

Charlie would still be at risk of getting twitchy lungs and the cold weather could still trigger an attack but at least if something happened, we would be at my mum and dad's with their support, at a fixed address if we needed any medical assistance, at the very least near their house or ours.  If nothing happened, Charlie would be having fun with his family, acting like a normal three year old, which is what he deserves after the year he has had instead of being dragged from pillar to post, in and out of shops.

This is my brain at the moment.  Sledging wasn't even an option and yet I had thought about it in this much detail and preferred it to the alternative day we had planned.  I risk-assess everything without really meaning to cause anyone any stress even though I clearly do.  I don't mean to let the asthma dictate our every move but it has to, to a degree. 

As it happened, we ended up dropping Emily off and going to a different super market at my suggestion where we could shop for food and clothes.  We even treated ourselves and our boys to a warm drink and a cake at the cafe before picking Emily back up (we took Em a cookie). 

Charlie wasn't in and out of the car dealing with changing temperatures, we got our jobs done and squeezed in a treat.  I found the compromise, pacified my anxiety and kept control of the situation without driving my husband to the edge - that's a place I am better standing alone.  What I have learned?  I have learned to take a step back and voice the final plan, rather than stress openly about the options.

Right now, we are all back at home, sitting in the warm glow of the fire, watching movies and scoffing popcorn.  Charlie is absolutely fine, his asthma is quiet, you could almost forget that he has it, though it would be stupid to completely relax.  To me it is just a sleeping monster that will eventually wake up and we need to be ready to hold it off for as long as we can before it gets to Charlie.  Its just a shame that even when it is asleep it makes me crazy!

 

It's Just Too Cold.

"It's just too cold."

07.02.17

I have been having a bit of a battle with myself this week.  All weekend I have been feeling nervous about Charlie returning to nursery.  I knew he was well and off his ventolin but handing the responsibility of his asthma over to someone else is hard.  Ultimately, if something were to happen to him, it would be my fault for not preparing his minders properly and I would never forgive myself. 

I work night shifts and was on duty Sunday, which made my anxiety worse.  The plan was, Charlie's childminder, Serena would walk him and his sister to school in the morning and pick him up at the end of nursery, watching him for the afternoon whilst I slept.

I have never had any anxiety over Serena watching Charlie.  I just trust her.  She is so on the ball and has acted before when Charlie's asthma has been aggrevated.  I feel calm when I know he is with her more so than anyone else.  My panic was about nursery, which sounds so terrible because our nursery is absolutely wonderful.

I finished my shift at 8am and to my dismay the temperature outside had dropped to minus four and the cars were frozen over.  I would like to say my instinct made the decision that I would take the children to school but it was pure fear.  I was frightened that if Charlie was exposed to freezing temperatures, even wearing his fleece hood, his asthma would flare up.

To make things worse, every Monday the nursery children take part in "Muddy Mondays" whatever the weather - where they go outside for an hour to look at the wildlife and learn about nature.  I do not want Charlie to miss out on these things, but I knew he couldn't go outside in the freezing temperatures, the risk of it triggering an attack was too great.

I got to school early so I could speak with a member of the nursery staff.  I had already written down all the new information we had gleaned about his asthma following his recent attack and wanted to hand that over.  I explained my concerns about the temperatures outside and asked her if he could stay inside for the hour.

Unfortunately  the nursery do not have enough staff to accommodate this, espcially on that day as a member of the team had called in sick.  The teacher I spoke to tried to be as helpful as she could suggesting she speak to the head teacher to see if an extra member of staff could be funded but felt doubtful of the result.  We then discussed switching Charlie's sessions so that he could have Monday's off and do a full day on Fridays.

I was a bit blindsided.  I can not describe how tired I am after a night shift, I just don't function very well.  I knew I had to sleep but I was being asked to make a decision about Charlie that to me was taking a risk on his health.  I felt like I was being neurotic and over bearing but I knew deep down he wasn't safe.  He had only been off his ventolin not much over a day and was still coughing a little.  The fact I felt the need to explain myself, to make the decision convincing is what bothered me.  I decided not to leave him at nursery and thankfully, I was able to drop him off at Serena's at 10.30am and get off to bed for a couple of hours sleep.

Now having caught up on my sleep and being able to think straight, I am grateful that nursery tried to come up with a solution.  However, we are not changing Charlie's sessions.  His asthma is not dictating to us what he can and can't do long term.  It is about making allowances.  If nursery can not give me what I need regarding Charlie's condition, that's not their fault and the solution is, he just doesn't go that day.

It has bothered me though.  Charlie starts school in September and his absences will not be looked upon with as much understanding.  I feel strongly that asthma does not get the same attention or consideration in schools that other conditions do or maybe there is something that I am not doing.

I know my son and I am beginning to understand his asthma.  My main fears are the teachers have never seen him ill, they only see him well.  I don't know if I trust that they will notice when he starts to have asthma symptoms.  I don't know if I trust that they will use his inhaler correctly or get the dose in him quickly enough.  I get chest pain over these niggles, literally lie awake at night with chest pain - no wonder people look at me like I have gone slightly crazy.

Charlie did go back to school today.  I would be lying if I said I didn't do a little dance inside when I opened my curtains and saw the sun shining.  He has thoroughly enjoyed himself, he always does.  He has come home with a sticker for good listening and the classroom's toy hedgehog to look after.  The only thing he didn't come home with was his inhalers.

This is my point.  Controlling my son's asthma is very important to me, more so to him.  This condition can be life threatening.  Important things like making sure he is carrying his inhaler shouldn't be missed by anyone.  I carry a spare on me all of the time in my handbag, so Charlie wasn't at risk by this mistake but if he had gone home with his childminder, she doesn't have a spare.

Thankfully, I have been reading advice on www.asthma.org.uk and have found out that all my concerns are very normal for parents of children with asthma.  I am not being unfair but I am probably not being as helpful as I should be either.  Comments from other mothers echo how I feel exactly but to assist the school to assist me, I need to be more proactive.  With this in mind, I have  things to action tomorrow including:

 

* Booking an appointment with our asthma nurse to write a personal asthma plan for Charlie.  We have a generic one currently but I want one tailored to him.  We can also check our inhaler technique with her.

* I want a meeting with the head teacher and Charlie's keyworker.  I want the school nurse to be informed of his asthma and the absences it has caused and I want him to have a file specifically for his condition. 

* I want to check the inhaler techniques of the staff that will be looking after Charlie in the event of a flare up of his asthma and I want to know, if I do provide them with their own inhaler and chamber, where it would be kept

- Ventolin should be carried on the person who may need it.  I would rather the teachers forget to give his inhaler back leaving it on the shelf in the classroom where Charlie is going to be.  Otherwise it would probably be locked away in a cupboard in the medical room where it is useless to him if he needs it.

*  I am going to get my childminder an  inhaler to keep at her house.  It is understandable that nursery will forget from time to time to put Charlie's inhalers back in his bag, however irritating this is to me in my most controlling moments!  It is ultimately my responsibility to make him as safe as possible in all scenarios.

 

I don't think this vigilance is over the top.  I am a qualified first aider myself and can say hand on heart from experience, having knowledge and putting it in to practice is two entirely different things. I only know as much as I do about Charlie's asthma from having been there through the good and the bad so far, there is probably still so much more for me to learn. 

I guess it is hard for me to admit that I am the person that needs to make the decisions regarding his care in order to keep him safe and part of that is to provide the right information and guidance to others who look after him when I am not around.  I do not want to make the wrong choices, he is too precious for me to get this wrong.  How can I be confident in others when I am not confident in myself? 

Whilst I am battling with myself, the focus isn't on controlling this asthma and it needs to be. 

 

 

Our Normal Moment

Photo borrowed off pixabay.com

05.02.17

Today has been a normal day!  Charlie is off his ventolin completely and at the moments during the day when I am on heightened alert, he has been a healthy, happy little man with no asthma related symptoms.

He has played with his cousins at my mum and dad's house this afternoon.  Running, squealing, giggling and causing their usual havoc without a moment of concern.  He hasn't coughed once and although he has sneezed a couple of times, his colour is back and his energy is infectious.

I can not say how differently you look at your child when they have been very poorly.  This is the one thing that has really upset me since Charlie had the nasty attack back in November.

I find myself even now counting his breaths per minute to see if they fall in the normal range.  When I am dressing him, I am watching his ribs for recession, when he is talking to me I am only half listening as I concentrate on where he takes his inbreath and whether he is talking in complete sentances.

If Charlie is playing or running around, I find myself asking him to calm down, go slower, breathe deeper.  I am so fearful of him having another nasty attack that leaves him so poorly, I just don't want him to go through it again, knowing that it could actually be a lot worse than what we even experienced.

Its not that I do it on purpose.  I just seem to never relax off high alert.

He is back at nursery tomorrow and will then spend the afternoon with our childminder as I am doing a night duty tonight. I know his teachers are qualified first aiders but calming my anxiety down enough to let him go and be the responsibily of someone else  is excrutiating to me. 

I will be happier when nursery is over and he is with our childminder because she has dealt with his asthma before and kept him safe, reacting quickly and alerting me when she has been concerned.  Although I would rather he be with me, she is the only person outside the family that I am completely relaxed with having him.

However, I have to tell myself that when Charlie is well, he really is well.  I have to stop looking at him as if he is constantly unwell which has been my mindset for a while.  I get angry that I miss little moments that should be a Mother's joy because I am consumed with worry about his asthma and then I feel guilty for not coping as well as I should.

I am getting better though and days like today leave me feeling grateful and relaxed.  We said bye to my mum and dad and came home where we spent twenty minutes standing on our driveway watching the murmuration of the starlings.

Charlie was mesmerised!  There were hundreds of birds and he was naming all of the shapes they were making in the sky.  We had dinosaurs, boats, cars - these starlings were quite the talented bunch! 

As I held my little man, he kept directing my face towards each swarm of birds to show me something he could see.  His chubby little hand gently pushing my face in the direction of the wonder he wanted to share with his mummy.

He was mesmerised and I was mesmerised not only by the birds but mainly by him.  I didn't think about his asthma or his medicine at all in those moments and for that I am so happy and grateful.

 

 

 

Vitamin C & Keeping Warm

Keeping Warm

04.02.17

 

I would never, ever seek to replace conventional medicine with alternative treatments for anything, especially my son's asthma. 

However, I do believe a holistic approach to health bolsters the Science and can only be beneficial, if researched and done properly.

At the moment, I am only looking at ideas. 

I know nothing about asthma other than what we have found on this journey so far.  I do know that every time Charlie has had an asthma attack, he has been poorly with a cold or infection and the attack has built up over a couple of days and lingers for some time after treatment has started.

In my simple, logical mind, I think that maybe if I build up his immune system so that these viruses are irradicated from his body before his asthma is triggered, he should have less attacks or at the very least, they will be less severe.

I also know that once Charlie's asthma symptoms start to appear, they begin galloping along if he is breathing in cold air.  Most of our breathing issues have begun on the school playground in the Winter months or on cold, windy days.

So, time for a new approach.  At the moment, we are all suffering from a virus in our house.  Thomas (our oldest) has enlarged tonsils, a sore throat and ear ache.  The Doctor has given him anti biotics.  The rest of us have started coughing and suffering from bad headaches. 

Charlie is feeling a lot better himself but it is constantly in the back of my mind that there is at least one virus in our house and he is still being exposed to it.  If we have different germs to what he has just suffered with, he could get ill again. 

With this worry, I have been reading information across a number of health sites on the internet and have decided to focus on vitamin C to try and build us all back up.

Studies show that vitamin C can not actually prevent colds but having your recommended daily amount can help reduce the severity of your symptoms.   Vitamin C boosts the immune system and has a lot of other benefits that to be honest, are not that relevant to our interest in it but can be seen as a bonus!

I am not going to start pumping us with supplements without the advice from our Doctor.  Too much vitamin C can cause stomach cramps, diarrhea and nausea.  None of this would be welcome under our roof!

Most people get enough of vitamin C from their diet alone but as we all know, when you are feeling ill, your appetite usually disappears.  At a time when you could do with high levels of vitamin C in your body, you are probably not getting it.

Therefore, I have done some research into the types of  foods that contain the best value of vitamin C and am off to the super market later to stock up on it,  The simple list includes:

100% pure orange juice

Bell Peppers

Strawberries

Fresh Pineapple

Mango

There are other foods that contain a lot of vitamin C which we do already eat as part of our weekly food planner such as brocolli and brussel sprouts.  Some foods are fortified with the vitamin, so I will also be looking out for these on the shelves.

Whilst the focus is on vitamin C, owing to the fact that we are all under the weather, I have also found out that some foods contain properties that act as anti inflammatories and others can assist to reduce histermine levels in the body. 

Given that asthma causes inflammation in the lungs and some asthma is caused through allergies, I will be researching these more and incorporating them into our diets.  Charlie seems sensitive to the tree and grass pollens around October time and Thomas suffers with dreadful hayfever most of the year, so we will all benefit if this approach does actually work.

I am feeling more positive than cynical about this although it is going to be hard to decifer whether the slight changes I am going to make to our diets over the next few weeks are actually benefitting Charlie and his asthma at all.  There is no way of measuring this but the logic is there that suggests it could help.  "Could" is good enough for me, particularly as it won't hurt.

As for keeping warmer on the playground, we have sorted that with a nice fleece ski hood which we bought on the interenet.  Charlie never moans about wearing it not because he knows it will warm the air that he breathes in but because it is bright red, his favourite colour!

 

 

Turning The Corner

01.02.17

 

I am not sure if this is the same for all asthma sufferers or not.  When Charlie has had an attack, a flare up or whatever it can be described as, he tends to be unwell for about a week.  He is usually given steroids, anti biotics and is slowly weaned off his ventolin.

 

This last attack has by no means been his worst since this started to happen to him.  In fact, it was pretty mild in comparison to the one back in November last year.

 

I was even convincing myself in the hospital that he just had a urine infection and was breathing fast due to a high  temperature, at one point it spiked at 39.4 degrees celcius.  I was so taken aback when the Consultant said she heard his chest wheezing she had to convince me by letting me listen myself.

 

It hit me quite hard actually.  The panic when she said asthma surged up inside me, I felt gutted.  I wanted it to be a UTI, I didn't need my husband to see and experience the asthma so mild after what I saw in November last year.

 

 I have reacted quite badly to that experience, it has changed me a little, a lot actually and I sometimes feel that I am totally alone in the anxiety of it all.  When I panic more quickly, when I fuss over Charlie more prefusely, when I get angry, when I can't sleep or eat with worry; its difficult for others to process.

 

Anyway, I am not sure if this happens to every asthma sufferer.  Charlie will seem to be unwell and then suddenly, the colour will return to his little face, a sparkle will hit his eyes and his cheekiness knows no bounds.  He becomes well again - literally in front of you in a really short space of time even though you have spent an exhausting week watching his every move, this still surprises you.

 

It makes the whole experience seem like a bad dream, almost like it didn't really happen to warrant how frightening it felt.  Normally when this corner is turned there is a huge sense of relief, you can see it in Charlie as well, though he could never articulate it.

 

Charlie has finished his anti biotics, he has finished his prednisolone and we are down to four puffs of ventolin every six hours, I should be relaxing but I am a little on edge as he is still coughing.  That cough tells me that the virus hasn't gone and that virus is a threat.

 

I have my alarm set ready for his 12.45am dose of ventolin, I also have it set for two, four, five and six hours after that time incase I am not awake because I need to check his breathing.  He is still going to be sleeping next to me in my bed tonight.

 

I know he has turned the corner but there is a niggle very deep inside me holding me back from relief.  I am unsure if its because I know something like Mother's sometimes do or if the emotions from November last year are still grabbing me in a panic.

 

Right now, he is sound asleep, settled, snuggled and breathing "lovely" and that, right now makes me smile.   xxx

A Bit Of Light?

31.01.17

 

We are still learning about Charlie's asthma, what triggers it, what medication and amounts are best to control it and how to deal with it, not just physically for him but emotionally as parents.

 

The one promise I have said to Charlie over and over is that Mummy will keep him safe and I do have this determination to try whatever I can to protect him as much as I can alongside his medications. 

 

I am realistic enough to know that unless he grows out of this, I am not going to be able to cure asthma but there has to be tried and tested methods that have worked for others that may help my little man.  I will at least research any suggestions made.

 

I was updating some friends and family on Charlie's progress since his asthma flared up at the end of last week and one of my Facebook friends suggested I look at buying a Himalayan salt lamp.

 

So, I did a little reading about Himalayan salt lamps.  The most well known benefit of salt lamps is that they cleanse the air, removing dust, pollen and other contaminants through hygroscopy - a science thing where unwanted particles in the air get absorbed by the salt through moisture - though don't ever quote me on the science!

 

I also read that it reduces allergy and asthma symptoms.  The argument is the salt lamps remove microscopic particles of dust, pet dander and other things so a person with asthma will notice the difference in air quality in just two weeks! (At this point I was sold and had already opened up a separate window to Amazon)

 

Amongst other benefits, apparently these lamps help ease coughing, increase energy levels (not that we need that whilst the Prednisolone is still in our lives) promotes better sleep, mood and concentration and a stack of other things I skipped past because I had read what I wanted to read.

 

- I know, I could spend a fortune on things that 'claim' amazing benefits in the hope that it helps Charlie. 

 

AND I WILL. 

 

Even if it assists only slightly in preventing an attack I would consider it money well spent. 

 

I can't hold him again in a hospital, his tiny eyes looking up at me whilst his little face pleads with me to make it better.  I can't hear him whisper breathlessly, "Mummy, help me" ever again because my heart can't take it; me being that helpless, watching his little body being that helpless.

 

Two Himalayan salt lamps arrived today.  One is shining in the lounge, one in Charlie's bedroom.  They are bulky, quite ugly and taste surprisingly nice (this I discovered by accident because the salt got on my hands, don't judge.)

 

You see, Mummy fixes things.  Every Mummy does, it's our job.  This is one of the ways I am trying to fix things to keep my precious little boy safe. 

 

We will see. 

 

 

"Mummy, I drawn me!"

Charlie VS Prednisolone

Our Little Super Hero

30.01.16

 

Today's battle is the third day of a five day war:  Charlie VS Prednisolone.

 

For those who don't know, Prednisolone is a steroid used to prevent the release of substances in the body that cause inflammation.  I guess it calms the lungs down whilst the asthma is aggrevated to give you time to control it.

 

Charlie's asthma is currently aggrevated.  He picked up a virus at the start of last week which began to irritate his lungs on Wednesday night.  On Friday we were at the GP's trying to prevent an asthma attack.  By Friday evening though, it wasn't going in our favour and our GP sent us to hospital to the Children's Assessment Unit.

 

Charlie is fine.

 

We are home on ventolin every four hours, weaning down the dose whilst balancing the need to keep him safe as his lungs are still twitchy.  We are on his usual preventor inhaler, Montelukast tablets, anti biotics, paracetamol and Prednisolone.

 

So far since Friday, I have been kicked in the cheek, wrestled to the floor, had Prednisolone splattered across my face and clothes and had to employ Grandma as bribary (for the greater good).

 

Today however, Charlie seemed quite pliable.  He agreed to take his "nasty medicine" with no strings attached.  I couldn't quite hide my surprise and practically skipped into the kitchen to prepare the medicine.

 

I dissolved the tablets in as little water as possible, drew it up in the syringe and came back into the living room holding the medicine in a tight grip.  I looked at Charlie, he looked up at me, I tried to ignore the sea of toys he had tactically spread across the floor creating a barrier between us.

 

I took a deep breath and said, "Firstly little man, I love you to the moon and back.  Secondly, I am so proud of you for taking this medicine and thirdly, if you do this like the good boy you are, Mummy will buy you a treat."

 

Charlie looked at me again with his big blue eyes.  I said with the smallest hint of desperation in my voice, "Ready?!" and he replied defiantly, "no, I am backing out."

 

I don't blame him completely.  This stuff tastes vile.  I know, I made the mistake of telling him once, "it can't be that bad," whilst tasting it.  I couldn't stop my face contorting, my shoulders twitching or my head jerking to one side - all at the same time.  This medicine is pink.  It has made Charlie so suspicious that he won't even have Calpol unless he sees you take it out of the actual bottle. 

 

So back to today, I have had to sit him against the sofa and squirt this stuff through his gritted teeth.  Some of it squirted straight back out at me and the rest of it, hopefully the majority of it was swallowed.

 

Prednisolone turns our sweet little lad into a mini Super Hero complete with powers- from fun loving to overly assertive, from sweet to super strong and very vocal, so I will know how successful we were shortly.

 

It has been by far the best dose that Charlie has taken even considering the comedy.  I remember having to help a nurse once by holding his arms and legs down to get a dose inside him.  We practically forced him to take it and I felt like the World's worst Mother that day.  Charlie soon forgot about it, but I don't think I ever will.

 

The stuff is disgusting.  I am proud of Charlie, he is taking a lot of medicine at the moment.  I keep asking how his breathing is and he keeps replying with "lovely" which means he is okay so we are going in the right direction.

 

I would love to discover some tips and suggestions to make it easier to administer this one particular medication though.

 

I do have one suggestion of my own.   Perhaps they could manufacture the Prednisolone as a chocolate drop or fruit flavoured gummy sweet of some sort complete with a complimentary shot of something for the person having to administer it!

 

 

 

 

 

The Build Up

When he was brand new!

From the age of 22 months, our little man, Charlie has visited hospital on numerous occasions with breathing related issues.

 

Initially we were reassured that he was presenting with a viral wheeze, something very common in younger children.  One look around the assessment unit confirmed this fact as most of the children there were hooked up to sats machines measuring their oxygen levels and some, including Charlie were being treated with nebulisers and steroids. 

 

The third time Charlie was admitted, he had a chest x-ray which showed up an infection.  A course of antibiotics treated this whilst ventolin was given to assist his breathing. We just felt he had been unlucky and was susceptible to getting things on his chest.  He would, in all likelihood grow out of this by the time he was three. 

 

We took the ventolin and weaning plan home (you have to be weaned off high doses of ventolin) and visited our GP within 48 hours of leaving hospital.  Our GP prescribed a blue ventolin (reliever) inhaler and discussed whether we had asthma in our family.  I was a bit taken aback, we did have hay fever and eczema in the family which alerted our GP to the possibility that Charlie could be showing signs of asthma.

 

This is what we knew.  Doctors can't really diagnose asthma in children until they are about six years old but can treat respiratory problems that present as possible asthma with asthma medication after a certain age.

 

Following another visit to A&E with a fast breathing rate, we were prescribed with yet more anti biotics.  We went to our GP again who decided to take the step to prescribe Charlie with a preventor inhaler - a brown one to be taken once in the morning and once at night.  The Doctor told me that we were treating it as asthma.

 

From the beginning of what has now become an ongoing journey, our GP's have been amazing with our little man.  Always available to sound his chest, give advice and prescribe medication if needed.  Never have I been made to feel that I was wasting their time or being too over protective.

 

Yet in my mind Charlie's asthma was only a slight maybe, something I desperately didn't want him to have and wasn't really looking to confirm because asthma really scares me.  I know of children who have lost their lives to this, suddenly, unfairly.  Whilst the seed was well and truly planted in my mind, I tried to ignore it and looked at all the treatment as a precaution until Charlie stopped getting these breathing issues. 

 

To keep him out of hospital it became routine to give him one puff of his brown preventor inhaler in the morning and one at night.  His blue inhaler, which never really saw the light of day was for if he presented with cold symptoms, to keep his airways open.

 

As I remember, he did have a very nasty cold at one point so we started him on four puffs of his ventolin every four hours day and night all over the weekend and took him to the GP on the Monday.  His chest was clear, we had kept him safe and felt pretty smug.  It seemed quite easy actually.

 

Summer was so good.  We spent a week in Cornwall as a family, my husband, myself, Charlie and his older brother Thomas and older sister Emily.  My brother - Uncle Ste - also came a long for a couple of days. 

 

Charlie ran up the steepest hills playing pirates, swam, played football on the beach and his ventolin didn't even leave his bag, though we always carried it with us.  I was absolutely convinced that this was not asthma, he was safe.

 

Charlie started nursery school a term after his third birthday in September 2016 cute in his uniform and carrying his school bag, inhaler and asthma information. 

 

Nursery brought new adventures, new friends and amazing experiences but the time of year also brought the cold weather, the viruses and the problems.  Whenever we were worried our GP's were available to sound his chest and reassure us. 

 

I was really nervous but he was enjoying nursery and time was moving very quickly.  Then he caught a cold that changed everything.  I am not quite ready to revisit that just yet.