new here....our story

Hi Everyone,

My name is Helen, I live with my partner Joe and or 3 children, Rhianna, 11, Alex, 6 and Jack who is 4.

Up til 2 weeks ago Alex had never been diagnosed with asthma and never shown any symtoms of it.

Here is an outline of what has happened to us.

Thursday 24th March - we noticed Alex had a bit of a dry tickly cough which was pretty constant throughout the night but he seemed to be fine otherwise in himself so we didn't think much of it.

Friday 25th March - it was an inset day at school and the kids were lined up to go to the childminders whilst i worked. Again he seemed fine except the cough although when i picked him up they did say he had been coughing a fair amount but again what do you do with an otherwise healthy child who is just presenting with a cough? We were giving him honey and lemon glycerin medicine to help his throat.

Friday night/early Saturday morning - we woke up to him coughing an awful amount and complaining he couldn't breathe. Alex never complains he is poorly was asking for a doctor. I think it was about 1-2am so we called an ambulance who came out pretty quickly and gave him a blast on the nebuliser with and extra 45 mins of oxygen and by the time they'd done his sats were fine, he was a lot more relaxed and even laughing with the paramedics so they said he was ok not to go in. We signed the paperwork and off they went. He went back to bed and seemed fine.

Saturday 26th - we woke up to him coughing again at around 7am but we had sussed out that giving him ice lollies helped calm him down so Joe went out to get in a few boxes of rocket lollies ::)

Rhianna and I had a singing thing going on in Eastbourne so we went over there leaving Joe and the boys back home. We was only gone for a couple of hours and when i got home he'd had abut 12 lollies and was asleep on the sofa.

When he woke up he appeared to be struggling again, he was heaving his whole upper body to get air in and was slumping over the furniture. We called NHS direct and they put us straight through to a nurse at the local out of hours surgery which happened to be just down the road. We explained what was happening and they said we needed to go down to the surgery but they would phone back with an appointment. so we waited and waited and an hour later we still hadn't heard anything so we called them back and again they said they would call and get back to us - still nothing so we decided to take him down there ourselves. When we got down there, there was no- one there so we went back home and I called again and at this point was told that the doctor had gone on house calls (!!!!!) and was advised to take him to a&e in Eastbourne. We live about 40 mins from Eastbourne and about 20 mins from Brighton so we said we'd go to Brighton even though we ran the risk of it being busier than Eastbourne.

When we got to Brighton it was packed we thought we'd have to wait for ages but luckily they got us straight in and the doctor again put him on a nebuliser and oxygen before packing us off home with a prescription of prednisolene to take for the next three days.

We got home and was there for no more than 2 hours before he went downhill again, we didn't mess around with NHS direct this time and took him straight back to A&E. This time the doctors took us a little more seriously and gave him a couple of nebulisers before transferring him to the Childrens Assessment Unit (CASU) in the kids hospital.

I think here he had several nebulisers before they decided to admit him overnight - mainly because this was his third contact within 24 hours. We finally got taken to the ward at about 2am and they carried on nebulising him throughout the night although gradually spacing them out. (I had the worst nights sleep ever - even worse than staying on the ward with 4 newborn babies in the room after i'd had Jack!!) The next day they carried on spacing the nebs out and introducing 10 puffs of blue inhaler to see if he could make the 4 hours between inhalers without needing extra help.

Joe had brought the other 2 up with him at lunchtime and so as well as having a bored Alex on our hands we also had Jack and Rhianna getting bored but able to run around which is not what they should be doing in a hospital! By 7.30 we still hadn't had a definite yes he was able to come home - they were waiting to see if he made the 4 hours between 4.30 and 8.30 and it was already decided that if he needed to stay in again, Joe would be staying so i took the other 2 home in a taxi. At around 8.45 Joe phoned to say they were allowed out and were awaiting some medicine. I think they finally got home at around 11pm.

We had been told to give him 10 puffs of his inhaler every 4 hours and then each day drop them to 8 puffs, 6 puffs etc and see how he goes. He was also not allowed back to school til at least thursday.

Joe took the Monday off so I could go to work as i was due to be starting in my new job position and although work would have be fine about the situation I really wanted to get going with it and knew he would be fine with Joe.

So Monday he spent at home and was fine, Tuesday he was round my friends and again was fine. Tuesday was the day he finished his prednisolene course as well.

On the Wednesday we noticed him coughing a lot more. My mum had come round to look after him and aside from the cough he was ok - apart from complaining his tummy hurt - which you would expect if he had spent almost the whole week coughng! By the time i got home from work and the school run at 4pm he was dozing on the sofa but I could see he was working hard to breathe again. I gave him more of his inhaler but was becoming concerned about the amount he was having as by now he was definitely not making the 4 hours - it was more like every 2 hours! At around 5.50 I decided to call for an ambulance again. They came within about 10 mins - I think they arrived shortly after Joe got in from work

Again they gave a nebuliser at home before taking us back into a&e. When we got there we were made to wait in the a&e corridor for 15 mins before they transferred us back to CASU. In CASU he was hooked up to a monitor and given 4 back to back nebulisers to try and stabilise him more. At this point they also put the magic cream on both his hands ""just in case"". Joe and I both thought they would be sending us home again so was pretty pointless.

Once the back to back nebs had finished they tried stretching to to half hourly nebs but within 15 mins he was going downhill again so i went to get a nurse who came and saw him. By this time he was getting really quite panicky and was really not co-operating. All of a sudden we had about 5 doctors and a few nurses crowding round his bed trying to get needles into him which of course freaked him out even more.

They decided to move him into the resus room and started him on more nebs and oxygen. During this time they again attempted to get the needles in to take blood tests and insert canulas. It took about 4 people to hold him down plus the nurse to get the blood out of him. It was horrific.

The nurse who took his blood also took a thin tube of it to check his blood gases levels - this is where they check how oxygenated his blood is - it came back that his blood had a high carbon dioxide level. A usual asthmatics carbon dioxide level should lie around 2-3, his was at 10 and at this point was not diagnosed as being asthmatic. Carbon dioxide is the used oxygen which is no good and can have severe effects on the brain messages.

All of a sudden things took off with a lot more pace and urgency - they injected him with a liquid salbutamol before hooking him up to an IV of a drug called aminophiline which is a bronchialdialator - basically it dialates the airways quickly! During this time he was also still on oxygen and nebulisers of salbutamol and atrovent.

All of a sudden we overheard one of the doctors mentioning to call the anesthetist and to call HDU and let them know to expect him. Joe and I looked at each other petrified and I just felt sick. Even now, thinking about it knots my stomach up at how easily we could have lost him if we hadn't of got help.

I must have looked terrible because one nice nurse came and asked if i was ok and put her arm around me and offered me a cup of tea - of course i accepted and when she asked how many sugars i just said lots!!!!

I cant remember much between this point and the meeting with his HDU nurse, he was finally stabilised and sleeping.

When the nurse came down she was briefed on what had happened before introducing herself to us and said we were just waiting on a porter to transfer us up to the high dependency unit. At this point it was around 10pm and the other 2 kids were being looked after by our neighbours boy who needed to be at school at 8am the following day so i sent joe home to take over.

We quickly went up to HDU - Alex looking like spaghetti junction with wires and tubes coming from him! I felt a lot more comfortable on HDU than any other time we spent in the hospital. His monitor was directly linked to the nurses station so whenever his sats dipped a nurse would come nd check what was going on - usually resulting in a nebuliser and a higher rate of oxygen but whatever they did, worked and he was soon stabilised again.

By the next morning the improvement was vast and he was able to play on the wii which kept him free from boredom over the next 3 days. Of course, he was fine during the day but at night time still needing nebs and oxygen so obviously there was still a problem there somewhere.

I think on the Friday we had a visit from the respiratory nurse and it was at this meeting that asthma was first mentioned, although it was and still is a mystery as to what it was exactly that caused the asthma attacks. So we were told that they would soon be weaning him of the nebs and onto 10 puffs of ventolin every 4 hours before going home but was told he wouldn't be going til he made it through the night with just the inhalers going 4 hourly.

Friday night came and again he went downhill, needing nebs and oxygen so home was out of the question for Saturday. But as he was no longer on IVs and his heart rate had returned to normal it was decided that he be transferred back to the medical ward.

I specifically requested that we have our own room as we had in HDU because of the crap nights sleep we'd had previously on our stay on the medical ward which they managed to provide....the only thing was it was miles away from the nurses station and his buzzer was not linked to the nurses station. Plus i had the extra worry of knowing that his monitor was now not linked to the nurses desk so they had no way of knowing when he needed help without me running down there to get a nurse.

So, that night everytime his oxygen levels went below 89% his very noisy monitor went off I got up to silence it - he was fine, sleeping and showing no signs of distress. The only times that night he did need help was again the time he was coughing and needing nebulisers and oxygen.....so again we presumed home would not be happening on the Sunday.

Sunday was a hard day, it was Mothers Day, we had plans and instead we were looking at another day in hospital, so imagine my shock at around 11am when the doctor came round and said we could go home! I knew he wasn't ready to be home, and i knew we would be back again. But it was mothers day and i was by now emotionally and physically shattered. My emotions were everywhere, i was trying to keep a brave face on for Alex, but i was petrified of going through this all over again and everytime i thought of it I was having to hold back the tears...in fact this fear stayed with me right until the Tuesday when we went back in. It was actually a relief to go back in because i knew thats where he needed to be.

So we took him home and carried on with the 4 hourly 10 puffs on his inhalers.

Sunday night he was actually ok - he was managing the 4 hours but was struggling although he was amazing at this point because he perfected his own breathing technique and managed to last the 4 hours. During the Monday he was ok, still coughing but we was managing.

During the Monday night he had his inhalers at about 2 and then at 4 joe woke me to say he was struggling again so i went through and sat with him to calm him down which worked and he went back to sleep until 6.20 when he woke up and had another 10 puffs. Only this time they had no effect :S I tried to get him to calm down again but it was just not happening. Joe was getting ready for work and i was faced with the decision of being on my own, with three children so before he went i called 999 and again they came out, did a nebuliser and got us off to hospital. This time he was stabilised in the normal a&e before being transferred to CASU. Treatment was pretty much the same although a lot less traumatic, We knew what to expect, and Alex was a lot more co-operative. He ended up back in HDU, on the same medicines - although he did have an extra infusion of magnesium - although i asked why i cant remember now!

We were only on HDU for 24 hours this time but had specifically been told we were staying until he was better. He was being well and truly pumped through with meds to try and resolve the situation once and for all and by the 2nd night in it looked as if they finally had control of the problem. They kept us in til the Friday to be sure and finally at about 2.30 we were discharged. This time i felt a lot more comfortable about him coming home.

Well, this has taken almost 2 hours to write and i have missed out things already like his chest xray etc etc but that is the main jist of things.

He is now on an 8 week reducing course of prednisolene, permanent brown inhalers and blue inhalers which will eventually be only as needed but for now to keep them going. We have a respiratory nurse appointment coming through to see her in the next few weeks as well as seeing the consultant in another 6 weeks.

So, he is fine. I wake up having nightmares about it though and then lay awake thinking about what could have happened! Although i knew asthma was a serious problem i never realised how serious it could get so quickly and without any warning. Alex is our healthiest child and is never poorly. Even after watching Jack with all his chest problems since having bronchiolitis he has never been as seriously ill as Alex was. The scary thing is, we still dont know what triggered it off to begin with so it could happen again at any time.

Also just to add i have since read a document on this website that patients that present at night should NOT be discharged until they are better, so we should NOT have been allowed home on both previous occasions because he was still needing oxygen and nebulisers.

I COULD write a letter to complain but I am thinking about how good HDU were with treating him and am just glad we still have him here with us.

Although i did say to Joe that if we ended back a 4th time with 48 hours then i would have complained. Touch wood he has now made it 4 days at home with no repercussions

12 Replies

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  • hi alex mummy

    welcome to the forum!

    sorry to hear of your traumatic time wiv alex recently, hopefully he is on the mend now with the inhalers and the steroids helping him :)

    hopefully they can do some skin testing maybe? that may help identify possible allergens that may trigger attacks?

    or does he have hayfever?

    magnesium is used same way as aminophylline - its a bronchodilator also, works well in children as well as adults. can also give iv salbutamol as well, though i know its not used everywhere - protocols etc...

    i used to work on genral paeds ward/ HDU area and used to give it to most of our asthmatics or indeed children that presented as such, i.e. wheeze, shortness of breath, tightness in chest, etc.

    in relation to what you said bout discharge home, normally children shouldnt be discharged unless able to tolerate at least 4 hourly inhalers? and in doing so, the nurses ensure parents - and if appropriate the child has good inhaler and spacer technique, and follow-up in place if necessary, but i cant be generalised in this, i can only speak from my own experience.

    glad to hear that alex is more co-operative now bless him, shows hea understands what is going on and knows he needs the treatment help him feel better....

    hope you start get more sleep all of you and you get some answers from your resp nurse and consultant :)

    xxx

  • Hi

    Welcome to the forum.

    It sounds as though you have gone through hell recently, hopefuly things will settle down ad improve, I desperately hope so.

    I also understand your frustrations and why you considered an official complaint, it is never an easy decision to make as some care received is excellent, while others......

    Take care and good luck to you ad the family.

    Mark

  • Hello and welcome to the forum.

    You really did go through a lot in such a short space of time but you did really well. Your asthma nurse can help address most of your concerns or pursue the doctors etc. I learnt how serious asthma was by going through it as an adult. If you make mistakes its costly as asthma doesn't resolve itself. If the medicines work its good if not you need help.

    Imagine your child Alex was healthy before all this it must have been a roller coaster journey, but he has great parents. You get informed, AUK( asthma Uk ) have asthma nurses available on this forum. You can ring them too and they can get you sound advice.

    Look after yourselves

    gill

  • So much in such a short space of time for someone so small. xx

    It really must have been so scary for you all. Thank goodness Alex has two parent's who have got their wits about them and are prepared to stand up and shout for him.

    I hope all goes well for you and Alex and he gets all the right treatment to allow him to go back to being what 6 year old little boys should be, healthy, active and full of life.

    All the best

    Nicola

  • welcome to asthma uk. I hope all is still going ok for you and your family. I have had similar experiences with my little boy. My advice to you from one mum to another is trust your instinct just as you have so far. I delayed treatment for my little boy as advised by GP and nhs direct that there was no imediate danger. I didnt make a complaint as dispite 2 very unhelpful individuals and bad advise generally I am overwhelmed by the amazing care my son has recieved. I have found this site so useful and hope you do too. take care, chell.

  • Welcome to the forum, you will find useful information and pick up some tips. You have been through a lot, I really feel for you. Strange that the asthma should suddenly build up like that without any previous symptoms. My nearly 14yr old son had asthma from babyhood (I am a lifelong asthmatic) but I can usually see attacks coming. Anyway, I hope things improve for Alex and for the whole family.

  • I was in tears reading your post, I hope writing it down has helped you deal with the immense rollercoaster you have been on. You and your little man and your family have been through so much, my son has been hosiptalised and the treatment is amazing, but sadly sometimes you need to fight for it. I am so sorry that your healthy son has been though such an ordeal. I agree trust your instincts and I hope your son is soon controlled and back to normal life again soon.

    Sending you best wishes x

  • Thank you to everyone that has replied, just to update that Alex has been really really well.

    His prednisolene tablets are down to 6 a day and reducing by 1 a week til they are gone.

    He is on 2 puffs of brown twice a day and 4 puffs of blue 3 times a day and for the 1st time reached his goal of 250 on the PFR.

    We have had no signs of anything setting him back so far except yesterday when he fell on the trampoline and hurt his chest which nearly sent him into a panic which i *think* may be one cause of his triggers because when we was in the 2nd time and they came at him with needles he got very panicky which caused another asthma attack.

    Touch wood he continues to improve.

    Just one thing i am worried about - actually 2....

    Being on the prednisolene so long is wiping out his immune system and therefore is susceptible to other germs which again will set off his asthma....so when he goes back to school do i need to let them know he has a low immune system and we need to know if there is anything major going around?? Or will that be a bit OTT?

    And the other is what if the dinner ladies at school dont know what to do in a situation where he is having an attack? You hear all kinds of stories that children are put in life threatening situations because of being denied their medicines when they need them most - is it neurotic of me to ask and make questions about the schools asthma policy?

  • Hi

    Sounds like you have had a really hard time but hopefully things are getting better. The school that my daughter is in have been really supportive with her asthma, she is in reception this year. I would certainly ask about their asthma policy and if, as was the case in my daughter's school, they don't have one direct them to this site. The school has agreed to have inhalers in the classroom as well as in the office as her asthma can be very unpredictable and they have been really good at helping her to do them- we were told to fight for this but actually the SENCO suggested it when we met. She has a care plan, wears a medic alert bracelet and has a card with her details and photo on in the staff room and in the register for her class just in case there is a supply teacher. Our asthma nurse also advised that if she ever needs different medication(number of puffs etc) to always put it in writing so that there is no confusion. Do everything that you feel you need to in order to put your mind at rest, as much as it can be. xxx

  • You poor poor thing. You've been the hell and back. It's terrifying and exhausting to see your child so poorly. I hope you are managing to look after yourself through all of this too. As a carer we need to stay well. Massive massive hugs.

    As regards to your sons school, I wouldn't hesitate to tell them everything and expain about his immune system. It's especially important in the case of chicken pox. I'm shocked they never had an asthma policy as I thought it was a requirement of ofsted. It's great that you are aware of such things and your son is very lucky that you are prepared.

    My elder daughters school has been dreadful with regards to administering meds and she has wound up having attacks on two separate occasions.

    The way I look at it, our children can't fight their corner, but we can. As parents we should and do fight and make sure that every caregiver knows the extreme. Asthma is such an under-rated condition that people need to be aware how bad it can become.

    Hope you and your little man stay well.

    Lots of love and hugs.

    This site is an amazing support. I certainly would not know where I'd be without it.

    Emily.x

  • Helen,

    As a class teacher, with a little lad with poorly controlled astham this year, I would like as much information about his current situation and medications as possible.

    As someone has already said, you need to be more vigilant about chicken pox when on pred, although when we had it in our year group I was told this only mattered if you hadn't had it yet. Also, different children react to steroids in different ways and one side effect can be agitation, in children this can sonmtimes mean aggrssuion which was the case for the lad in my class but because we are always aware of it we work around things with him a little differently and take him and a friend outside if he is getting frustrated and also you never know if his teacher actually does know what he/she is talking about as because I do his mum and I talk about me giving him his ventolin when I think he needs it and talking at the end of the day when he is going down hill and has stopped him actually needing pred course once this year we think because he has already had two other courses.

    I have a couple of kids with med cards in staffroom but only two children who's asthma is very bad. All children have free access to medication with duplicates in office (same with epi pens) some are supported with taking it but what we all want is for them to be independent.

    My aim was to make you feel comfortable in telling the school as much as possible and not feeling over the top, hope that is how it comes across xxxx

  • Alex's mother

    Dear Helen,

    As a children's respiratory nurse specialist in a big city with a regional service, reading your story made my heart bleed.What a terrible experience for you all to go through.

    I would seriously recommend after such an experience that you demand, yes I said demand, a referral to a regional children's centre to see the respiratory specialist if you aren't there already. Most city's have them or if not in your nearest city, very close.You could find a name/hospital to give to your GP/paediatricain by looking at your city's hospital own web site.

    You will be very frightened, have lost all confidence in everyone & need specialist care even if it is for only a short time say 6 months to help you all.

    Dont ever be afraid to call an ambulance (sooner rather than later) & never take him home if you are not happy. I support the fact that no child should go home after a neb. Long term steroids do require extra management thats why I suggest regional rather than local management.

    I really do hope things improve.

    A

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