To be bloody miserable

[Bobbiesmum]

My ds is 11 months and is just starting his 14th admission to hospital with bronchiolitis.
It's 6am and I'm sat in a and e alone with my beautiful baby boy. I got a cab here alone as dh had to stay at home with dd.
At first family and friends rallied around but we are in hospital so often no one really bothers anymore. Dh is self employed and needs to work. He did keep taking time off at first but these admissions are too frequent now so I sit in hospital alone watching my poorly baby get so sick.
I know there are people much worse off but it is so bloody hard. AIBU to be so miserable?

Go to Center Parcs. If you need a&e it won't be the hospital you work at and you will be able to be more -stroppy- assertive. So sorry your boy has pneumonia and hope he turns the corner soon and that you get some rest. Hope DH can come in to do a shift for a reasonable stretch so you can get a bath and shut your eyes at home for a few hours.

Glad you got lots of support. Have noticed on here that it's always there for the sensible stuff when it's needed.

Mon not mob, sorry typing on I phone

Got clarithromycin and ventolin. Sounds like you are very experienced in this stewie, poor you. Will def join your support thread, thanks for inviting me!
Now just to decide whether to still go on holiday (have cancelled 5 so far this year). Was meant to go to centre parks on mob, still got 2 days left....

Thanks everyone for your lovely messages . Once, my phone won't let me reply to your pm for some reason but it is much appreciated.
Poor baby has pneumonia, going to have more immune tests and start on monteleukast. I need a good sleep now!

glad you have a bed at least

it is completely exhausting, i hope he'll turn a corner soon, i dare say when he goes into his second year, let us know how you get on

Jic your post is exactly what I wanted to say but too tired to articulate it!
What wonderful support on here. Hate coming in as we co sleep and they forbid it but today I think they appreciate my exhaustion as we have a proper bed instead of a cot. Result!

completely understand you bobbiesmum, it must be so tough for you DS was exactly the same in the first year and it really was hell. exactly what you're describing, nobody listened, just in and out of a and e every month or so. nobody wants to say athsma but im convinced it is and also the spacer and inhalor he's on works now, but he had to have lots of steroids etc in the ist year. has definitely improved as he's got older so i imagine your ds will too just due to the fact that theyre bigger and airways get bigger

yadnbu it's really hard to watch your child and be so helpless

Have got a spacer and daily inhaled steroid, making no difference to frequency. I think this genuinely is bronchiolitis each time, very wet chest, confirmed on x ray and he is so well in between times (which admittedly isn't very long)
Am just really fed up with it all and fed up of doing it alone

That was the word I couldn't remember. It was a small yellow plastic (they came in orange too) spacer and it was much much more effective than the great big transparent plastic one. 15 years ago not avail on the NHS but 25pds very well spent.

Would be very grateful of referral recommendations, I am in the midlands. Oh and no one is teaching me to suck eggs I am so tired I don't even know what day it is!

You poor things :(

DS had that once and that was bad enough - he's now got a ventolin inhaler and spacer to use whenever he's looking sniffly or wheezy.

Are you sure your family/previous Helpers actually know you still need support, are you still asking them? They may have assumed that as you've been through it so many times, it's not a big deal to you?

Thanks guys, it does feel like you are the only one that's been through it. Good to hear your dc are well now. I think having medical knowledge makes the dire emergency care all the more apparent.
Once, would greatly appreciate a pm re referral.

Sorry - didn't mean to teach you to suck eggs. If it helps I will send a private message to tell you who we had him referred to.

No YADNBU.

If its any consolation from 7 - 13/14 months ds was ill constantly, chest infections, ear infections, waking in the night, ever night, turning blue choking on mucus etc - it was hell! Then he got a bit bigger, got to about 14 mlnths or so like I say and wham, a different kid. He is almost 4 now, he was ill with a virus last week but thats the first time he has been properly ill (more than a cold) in a year. when he was the age of your ds I panicked that there was some sinister underlying medical condition, there wasnt, he just had to get through it, it was horrendous and cruel but he got there. Your ds will too.

Thanks once. Problem is no one will call it asthma as he is under 1. What makes it worse is I am a bloody doctor in this hospital and we still don't get anywhere.
He does have a consultant but general paeds not resp and everyone just tells me these admissions are just 'bad luck'.
Waiting for a bed now, a and e doing their usual of putting monitors on him, turning the alarms off then ignoring us.

Thanks once. Problem is no one will call it asthma as he is under 1. What makes it worse is I am a bloody doctor in this hospital and we still don't get anywhere.
He does have a consultant but general paeds not resp and everyone just tells me these admissions are just 'bad luck'.
Waiting for a bed now, a and e doing there usual of putting monitors on him, turning the alarms off then ignoring us.

Bobbiesmum you are having a horrid time and I know it's dreadful we have been there - almost - ds had 5 admissions and endless visits to a&e, and the cystic fibrosis test, etc. It doesn't sound as though his asthma is under control. You might have to put your foot down to do the following:

1. Insist on referral to the consultant in charge of paediatric lung disease.

1. Insist on referral to a specialist paediatric asthma sister.

We spent months and months with portable electric nebulisers etc., as soon as we got the above referrals it was explained to me that often babies hold their breath when a mask is put on them so counting to 10 (as I had been shown) was fairly useless. You have to watch them take a breath - 8-10 is good but they get most of it on the first two. Also they recommended a small plastic (bright yellow or orange) tubular nebuliser and explained that it was more effective because the inhaled medicine had less far to travel from the source. This meant the steroid (pulmicort) got to the baby better. The smaller equipment also made it easier to hold the baby still to make sure he inhaled better.

We were off the electric neb in 10 days and there were immense improvements.

I do understand this is really upsetting but things will get better for you - many hugs and for baby.

Good luck.

Bobbie, no I don't think you sounded self-centred at all! Just knackered and very worried about your boy.