Coping with no sleep

[kellyjo]

My son was rushed into hospital Sunday with his asthma and is over the worst but isn't ready to go home yet. The problem is that I've been here with him 23 hours every day leaving only to go home so i can shower and sort out the animals, but i just can't sleep!! I've managed about two hours tonight, the same last night and none at all Sunday. So now I'm tired and getting tearful and it's looking likely we'll be here for a couple more days yet, news that he isn't going to take well. I've haven't got anyone who can come and take over here for a while so i can go home and sleep and i wouldn't be able to settle away from him anyway. His dads been coming in for the hour i go home but doesn't seem to want to stay longer even though his work have given him the time off, but then he's never really good enough so no change there! I just don't know how I'm going to get through today and im really missing my other two kids!!
All suggestions sensible and amusing welcome. Cheer me up please guys xx

[vjones777]

It's always difficult when someone you love is in hospital. But it sounds like he's on the road to recovery. It sounds like he's not in intensive care or in imminent danger. Probably the best thing you can do for all of you is to go home, get some rest and try to restore some semblance of normality.

It would probably be good for your son to get a straight 8 hours sleep - use that time to get away yourself. If he can't manage 8 hours at night, I know asthma can often be worse at nights, then see if he sleeps during the day - whatever works.

He's not in danger by the sound of it... perhaps try and back up a bit and look at things from a different, brighter, perspective. That will help him when he sees you not stressed out.

You'll also need to be refreshed for when he comes out of hospital back home so you can look after him then if needed, and do the rest of things you need to in your life.

Look after yourself first so you can look after others. You HAVE to have that balance.

All the very best for a great recovery and lots of peaceful time ahead.

Vic.

[kaivalagi]

Sorry to hear this KJ, best advice above, you'll both need sleep.

Also has the hospital provided a bed for you alongside your sons? If not ask for one or maybe it's best going home to get some me time for just a little bit. Are you driving back and forth...if so be careful...no sleep and driving dont mix well!

Please look after yourself, only then can you properly look after your son. Easier said than done I know...

[Bri w]

Good to hear he's improving.... so now its your time to relax.

Get yourself down to the theatres. Dress up in theatre greens/blues and go in and have a whiff of the gases. Guarantee you'll have a damn good sleep with that stuff in you... or you'll see some of the most beautiful colours on the planet.

[pookie]

See if they have a side room..grab some ear plugs and those airplane eye cover thingies. Not sure how old your son is but maybe have a chat and sound the idea out. Agree with the above re going home and looking after yourself.

If it were me I'd get dad there for an hour and make sure he hasnt anything on ( get a couple of dvds) and go home for a kip ;)

All else fails have some cake and tea.. hope you son gets sorted out and back home soon.

[Stenno]

As a shift worker, I tend to just eat my way through sleepless nights which does lead to an unfortunate tyre of fat around my hips mind. Go get some sleep at home if you can, most kids find their parents an embarassment anyway ;)

[dizzyblonde]

Looking after children in hospital is horrendous :(

Go home, and go to bed at night. It's easier said than done, but you do have others dependant on you too.
If he's over the worst, I'm sure that's a signal for you to relax a little.
When Oli was in special care, and I was told I couldn't stay in hospital anymore, I cried all the way home. I felt like a bit of a spare part and didn't know what to do, but my eldest hadn't seen me in nearly four days or so, apart from the odd visit. It just didn't seem right leaving baby.
The special care baby unit nurses are extremely capable, and I felt like I was intruding, so took that as an indication to get some sleep!

I'm sure those looking after your son will do their job, so he can come home quickly,

[missyburd]

Sorry to read this KJ but you ain't no help to anyone if you're not in a good state yourself, your lad won't want to see you down, he needs his jolly mum to lift his spirits! As long as the worst is over, you've come through that and now it's time to get you straight in time for him coming home :) Take care hun xx

[Dabteacake]

Depending how old your boy is I would leave him with the hospital staff. I had my tonsils out when I was 7 and spent about 4-5 in the hospital. Both my parents worked so I stayed there and amused myself. Tell him when your going to visit so he knows he will see you at whatever time and if you leave about bedtime for him you can still get home and rest and be back for about 8 - 9 yourself

[-Ralph-]

I can understand not wanting to leave him in the hospital alone and go home, I don't know how old your son is, but mine is 5 years old tomorrow, and to leave him there under the care of nurses he doesn't know would scare him sh*tless.

Asthma is also scary as hell for a parent, breathing oxygen is of course vital to life and asthma attacks can be fatal. You can also be in hospital for a long time with it as until they are managing 4 hours without inhalers they won't discharge the patient.

I've been there myself a few times KJ, and Kettering children's ward are actually very good and let you climb in the bed with him to get some sleep. You still don't sleep properly though as there are other children crying, parents coming and going, a visit from a nurse or doctor every hour or two (and when the doctor comes you want to speak to them).

If the hospital you are in won't let you share the single bed, then take in a camping mat, a sleeping bag, a pillow, some ear plugs, and an eye mask, and camp on the floor next to the bed and try to get your head down as much as you can.

I have all of these things I can lend you all (my camping mat is a 2 inch think Thermarest that at 16 stone I sleep soundly on and don't feel the floor) and I'm close enough to bring them over in the car. Or if you need anything else I can help with let me know.

Take care x

[Bibio]

i personally don't know why you feel you have to be there. it's a hospital he will be cared for.

if you want to wrap your children in cotton wool and make them scared of the day they have never seen at an influential stage of their life then that is going to carry on threw to adulthood.

when i child gets scared it will run to it's parent if that parent keeps letting the child run to them then that child is always going to be scared.

[-Ralph-]

I refer myself to my new signature, so I won't bother to reply. Thanks Cheryl!

[kellyjo]

Thanks for your replies guys. It's been a dreadful few days, his episodes are becoming more frequent and more severe and the 'trial and error' approach to prevention isn't working too well at all. If it was something as obvious as a cat allergy then i could be pro-active but his asthma is virus induced so every time he comes into contact with a bug we end up here. On Sunday he went from having a runny nose to being in the high dependancy unit within a couple of hours. His treatment has been aggressive but made him very poorly, i can't imagine how he must have felt - breathless, wheezing, heart racing, vomiting every 15 minutes and the little star hasn't complained once. I'm sure us adults would be far less tolerant!! He was fine over the holidays but 4 days back at school mixing with the other kids and here we are. It's going to be a long winter!!
The hospital staff have been brilliant as they always are and are happy for me to share his bed or do whatever necessary to get us through this as comfortably as possible, but it's difficult when he's wired up to heart monitors, drips and god knows what else. Whatever these nurses get paid for their long, hectic shifts it's definitely not enough.
Anyway, he's moaning that there's not enough cress in his egg sandwich so he's obviously feeling better and hopefully I'll soon be back in my own bed. Until then i'll be using tom and jerry's trick of matchsticks to prop my eyelids open :-) xx

[anna]

KJ glad to hear he is better today, try and give yourself a break, if you are unable to sleep well then at least get some rest time.

Make sure you are eating well and often if you arent sleeping you burn up more food then normal. Just take care of yourself xxx big anna hugs xx

[-Ralph-]

Thanks for your replies guys. It's been a dreadful few days, his episodes are becoming more frequent and more severe and the 'trial and error' approach to prevention isn't working too well at all. If it was something as obvious as a cat allergy then i could be pro-active but his asthma is virus induced so every time he comes into contact with a bug we end up here

That sounds extremely familiar KJ, what age is he and is he on any regular steroid and/or anti-histamine treatment, or do they just treat him reactively every time he gets a virus? Has he been allergy tested?

Allergies are compounding and they stack on top of each other to wear down your body's tolerance, so lets say your a bit allergic to cats but not enough to show symptoms, a bit allergic to pollen too, and a bit allergic to dust mites. Any one of those on it's own and you'll be fine, but get circumstances that expose you to all three at once, and you'll be ill. And an allergic reaction can simply look like a common cold, and everything that happens to kids, doctors first port of call is to blame a virus. If there is a virus around, and you are exposed to a lot of allergens you are intolerant to, your immune system will struggle and the virus will hit harder.

Asthma is always going to get worse when you have a virus or an allergic reaction.

In young children 2-3 yrs old, doctors in this country will not diagnose asthma as they want to get the asthma figures down (ridiculous that figures are more important than a childs health!). My son has had regular serious episodes exactly as you describe whenever he got ill, and each time the hospital blamed it on a viral chest infection. In my opinion though he was getting far too many virus for a 4 year old child who has been at nursery with other kids since 6 months old. 2 or 3 viruses a year is normal, one a month isn't!

Normally we'd have problems at night and end up in A&E, but the last few times he was really bad was during the day and took him the GP surgery which I can see from my house and I know they have nebulisers etc.

Once the GP had seen a few repeated episodes, and correlated that with his hospital records, he finally admitted that he was indeed Asthmatic and prescribed regular steroid inhalers. That was about 3-4 months ago now and his asthma problems have stopped! He has a bit of a cough and cold just now having started back at school after the holidays last week, but his asthma hasn't reacted to it. All he needed was the doctors to admit he was indeed asthmatic, stop blaming viruses for everything they couldn't explain, and prescribe the steroids which being asthmatic myself, I've known that he needed for the past 2 years.

He's also having some real hayfever type eye swelling on a day to day basis which he is now on regular anti-histamines for, and though it hasn't helped the eye swelling much, it has dramatically cut back the monthly so called 'viruses' he was getting.

After another fight with the GP, who was insisting that a daily eye swelling and stinging to the point of not being able to open the eyes was 'just what it's like when you've got hayfever' he has been referred to Leicester for allergy testing. I basically had to tell the doctor I wasn't leaving until he was referred, and the doctor admitted to me he hadn't been referred previously because of the cost.

You need to fight tooth and nail with the NHS when it comes to asthma and allergies in young children I'm afraid.

[kellyjo]

Hi Ralph, sorry about the delay in replying but we're back home and I've had some sleep so may now be able to answer coherently!!

Andrew was first diagnosed 3 years ago when he was 3. We'd had many nights of him coughing all night and the doctors hadnt offered any useful advice. Eventually we had a night where his whole body was heaving with the coughing and we took him to the 'out of hours' doc at the hospital who gave us ventolin and sent us home. Naively I'd never associated the coughing with asthma, to me asthma was full blown wheezing and as no one in my family has ever had the condition I had nothing to compare it to.
For the last two years he has only had a couple of episodes a year following a very definite pattern - a runny nose, a night of coughing followed by fever and vomiting the following day. I would take him to the GP who'd give a 5 day course of prednisolone and he'd be fine within a couple of days. At that point he was being prescribed 2 puffs of ventolin (salbutamol) morning and evening plus 2 puffs of clenil (preventer) and singulair tablets. It was manageable and I was often concerned that I was giving him drugs every day for something that occurred maybe twice a year.
Then at the start of this year it all changed. He was still on the same meds but in January he had a particularly bad episode which lasted two weeks, even with him taking the prednisolone every day. At no point did the doctor check his oxygen levels and I was told I could increase his ventolin, which seemed to make no difference whatsoever. I guess he had so much 'stuff' on his lungs that it couldnt get through to where it was needed. We had a really bad 6 months from January to June, it was never more than 2-3 weeks between episodes, always with the same symptoms and same treatment. At the start of June he was diagnosed with a chest infection and had 5 days antibiotics which seemed to do the job. But then a couple of days later we were back at the docs and he was diagnosed with pneumonia. He wasnt offered a chest xray or referred to the hospital but was given a stronger antibiotic. A week later he was given the all clear.
It was 'lucky' that when he had the same symptoms a couple of weeks later the surgery was closed so I took him to the out of hours GP at the hospital. The first thing he did was check his 02 sats and get him on hourly nebulisers. He was admitted and was on the ward for 4 days until he could maintain his 02 levels using inhalers and was discharged. Knowing what I know now that should have been the 5th or 6th time he should have been treated on the ward this year so I was angry and definitely felt the GPs hadn't been pro-active enough with his treatment.
That was just before the start of the summer holidays. For the duration of the holidays he never so much as sniffed or coughed and had a well needed break from feeling so continually poorly. Thank God!
But now here we are, back at school for a couple of days, runny nose and then suddenly Sunday evening he went grey, fell into a deep sleep and was obviously in a bad way so we ended up in an ambulance and back on the ward.
This was his most severe episode yet and nebulisers alone werent enough, he was treated more 'aggressively' with IV aminophylline, firstly a short strong dose and then a weaker dose over 24 hours. His heart rate was through the roof, he was very 'jittery' and he was being sick every 15-20 minutes. Very distressing for both of us.
Well its taken a few days but he's pretty much ok again now.
What worries me most now is that I feel that its only going to be a couple of weeks and we're going to go through it all again. He obviously has no immunity to coughs and colds and is going to be picking up everything at school.
Ive been advised to get him the flu vaccination next month but that is a live vaccine so will pose a risk of setting him off again, although I feel its worth doing in the long run.
As far as preventative measures go thats it, we've been sent home with ventolin and singulair as before but they've taken him off the clenil preventer and replaced it with 'Seratide' which I think does the same job but in a slightly different way. No ones mentioned allergy testing as a possible next step, is that something I should be pushing for?
People keep telling me he'll grow out of it but thats not much comfort at the moment when he seems to still be 'growing into it'!! The only other condition he's had is eczema but he's outgrown that now.

I know there are a few on here whose kids suffer the same way and would be glad to hear any advice/ suggestions you can give as a result of your own kids experiences, or of any different meds that you've tried and felt really made a difference.
We have a follow up appointment mid November with the paediatric respiratory specialist and it would be good to be able to discuss alternative preventative treatments - if there are any. I just wish I knew more.

Thanks for all your well wishes, im usually quite content as a single parent but when these situations arise I feel very 'alone' and its good to have a place like this to turn to. So thanks again xx

[-Ralph-]

It's so difficult to get to the bottom of this stuff KJ. The reaction of the Asthma itself can cause a mucus on the lungs which looks like a chest infection. This can compound on top of an actual chest infection to make a bad situation worse.

Sounds like he's had a bacterial infection hanging around in his chest for a long time, which comes and goes as his immune system ebbs and flows* (allergies, tiredness, etc). The doctors as usual blame a virus (because they don't like prescribing anti-biotics too often), until it develops into Pneumonia and they are forced to do something about it.

I would say as a rule of thumb (not always true viruses can do it too) if his cough is producing mucus, and he has a high temperature, you want to be pushing the doctor to consider a bacterial chest infection, not just a virus. You don't have to worry about making a wrong decision here, anti-biotics are a prescribed drug and if the doctor really thinks he doesn't need it you won't get it. If he prescribes it it's because in his heart of hearts he suspects a bacterial infection too, even if he prescribes reluctantly. One thing you should insist on if he won't prescribe, is that he sends a mucus sample away for analysis.

I had Pneumonia in 2009 and a serious asthma attack to go with it. I was moved onto Seratide (purple inhaler) for 6 months or so afterwards and it made a massive difference, so hopefully that will help him moving forwards.

Allergy testing? Well it depends if you think there's an allergens link to all this. I doubt at his age that he's got no immunity to coughs and colds, but there may be other things his body is constantly trying to fight which means when a cough or cold does come along, he can't take it. As a child that's had Eczema and Asthma, I really wouldn't be surprised to see allergies too. They have prescribed Singulair (Montelukast Sodium), which my nephew has (his asthma, allergies and Eczema is so bad he's registered disabled and has to carry an Epi pen everywhere he goes) and in his case its been prescribed specifically because his allergies trigger his asthma (asthma basically is an allergic reaction). Singulair is a specific treatment for Allergic rhinitis.

http://en.wikipedia.org/wiki/Montelukast
http://en.wikipedia.org/wiki/Allergic_rhinitis
http://en.wikipedia.org/wiki/Bronchospasm

If you suspect Allergies and the doctor isn't agreeing with it (and I might get flamed by others for suggesting this but at the end of the day it's up to you as his parent), then you could get Citirizine in the chemist off prescription and try him on it for a couple of months.

* Finally, and the reason I left this on an asterix until the end. I'm not suggesting at all this is what he has had, but just so you are aware that some bacterial infections can exist in your chest for a long time, and they come and go, not because of your immune system ebb and flow, but because they fight and supress each other. An example of this is Streptococcus pneumoniae and Haemophilus influenzae (google it), both very common in which together in your respiratory tract send your immune system nuts, but only periodically show symptoms, as one bacteria or the other is winning the fight.

[kaivalagi]

Glad things are looking up, hope you get to the bottom of it all ASAP.

I have similar worries (although not as severe) where not enough is known with my 18mth old little girl and her many febrile convulsions (4 in 24hrs, twice since July) combined with my history of convulsions then epilespsy at a young age it has me worried. Doctors really do need a push sometimes and unfortunately it will require more episodes with my little girl before more tests are on the cards which I find hard to accept as a parent.

I assume you have immediate access to the ward so you can get specialist care straight away if needed?

Fingers crossed for your son