4 week baby in intensive care - losing my mind

[Frecklesandspecs]

My 4 week baby has bronchiolitis and this morning took a turn for the worse. I took him to A and E and all the Dr s were called.
He wasn't breathing properly and they think he May have stopped breathing for a bit while waiting to see them.
Anyway he has had tubes put down him and was transferred to kings in London.

I've been at home with my other two sick kids while dh has been there during the transfer. I had planned to go and stay with him tonight but they don't have any available accomodation for parents.

I don't know what to do. Do I go and sit in the hospital ?
Stay home?
I'm really upset.

[Mishmashofstyles]

I hope he rallies soon OP, you must all be so worried.

[moonblues]

Morning freckles. Hope your baby is doing better this morning and gets off the ventilator as quickly as possible. So glad you have a room and that he is in the best place. I'm sure you'll be able to do more hands on care as he gets better.

[AnotherWorld]

Big hugs Freckles.

[wrenster]

Hoping things are looking a little brighter this morning

[BobPatSamandIgglePiggle]

Hi - just wanted to add my well wishes again. I've been thinking about you all overnight. I think when you've had a poorly baby it brings it all back. I too was surprised at how quickly DS rallied in the end though after a terrifying week.

Not being able to pick them up is awful - I remember counting down the minutes to doing DS' 'cares' every 3 hours as we we ren't 'allowed' to hold him except for 5 minutes after nappy change / feed.

It will pass though - hopefully soon and you can all get back to normal x

[clucky80]

Sorry to hijack your thread Freckles, and I hope DS is getting stronger today :) For those people whose babies/kids had bronchiolitis - if they caught a cold again would it result in them becoming very poorly or wld it just be a normal cold? My DS was in intensive care at GOSH and was only discharged less than 2 weeks ago. We haven't had him outside the house for fear of catching something but my older DS has a little cold and even though I have tried so hard to keep them apart, 5 week old DS now has a little cough again and sounds snuffly. I'm gutted and scared it will escalate. Does anyone have experience of this? - sorry again Freckles for hijacking thinking of you and your DS today x

[Sirzy]

Clucky - for DS he got broncholitis 3 times more before he turned 1 and was admitted to hospital on two of those occasions (although only needed oxygen and nebs rather than the HDU stays previously) - however, he has since developed severe asthma so his consultants think his lungs have always been weaker hence him struggling so much, the consensus is that he has been rather unlucky in that sense.

Plenty of children have it once and then never again.

I think the best thing is to just try to carry on as normal and not let it stop you too much - easier said than done of course!

[Mama1980]

Hi freckles just checking in, how is he today? Thinking of you x

[clucky80]

Hi Freckles, hope DS had a good night.

Thanks so much for your advice Sirzy. Wow that must have been such a tough year for you. How is your DS now? Is his asthma stable? Sorry I don't know much about severe asthma but I imagine it is very scary. Yep I think I just need to relax a bit and realise I can't wrap DS in cotton wool and protect him from everything, especially with an older DS at nursery! He seems ok today although has a cough and blocked up. This is how it started last time but I will have a lower tolerance this time in insisting he is properly checked.

[Elibean]

Just seen this - I'm so sorry, Freckles, it's an awful time to go through and it took me a while to recover from when dd2 went through exactly the same thing.

We had a week in HDU when she was 4 weeks old (bronchiolitis complicated by a floppy larynx) with CPAP, tube feeding, ABs, etc. dd1 was sick at home, and dh caught it too - I managed to fend it off till dd2 turned the corner.

I imagine you are at that stage where it's like watching paint dry, only much harder! I seem to remember it took five days for the virus to run it's course, and then she got better fast. So I'm hoping a day or two and things will start to get a lot better - meantime, am thinking of you and sending lots of luck and hand holding x

[Elibean]

Clucky - dd2 had a nasty cold a few weeks after her HDU experience, and the GP sent us back to the hospital to be on the safe side (they tended to panic because her floppy larynx made her sound as though she was struggling to breathe when in fact she wasn't). She was fine and was discharged the next morning as it wasn't RSV.

She never had bronch again. She never had a lingering cough. She did have a dreadful time with her enormous tonsils and adenoids almost choking her, so had surgery aged 26 months - but the infection had no lasting impact, and never came back.

Just so's you know that can happen

What I would say, is if in doubt just go get checked - peace of mind is valuable! Hope he's better v soon x

[spiderlight]

Hi - just adding another hand to hold and good wishes for your little one. How is he today?

[MairyHoles]

Hi, I'm just reading this with tears in my eyes, my nephew was airlifted to hospital ans put on a ventilator at 9 weeks old on Christmas eve 6 years ago for bronchiolotis. We had a 4 hour car journey at midnight to the hospital as my sister can't drive and were allowed to stay 2 minutes. My sister and her husband stayed at the hospital while I looked after her older child, luckily we all lived together at the time and her daughter was only 11 months so never really understood it was Christmas! They could only go in andsee him during the day and had to stay in hospital accomodation. I brought her daughter down every couple of days and eventually they allowed her daughter to stay with them the last 2 nights they were there. I remember how awful it looked seeing him hooked up to all the machines, there were 8 kids with the same thing in there, from all over Scotland and it was terrifying. Once they start getting better they really get better quickly, my nephew is quite prone to chest infections but so are his siblings so I don't know whether that is a long term symptom or not, but otherwise he is a healthy happy 6 year old who now wears size 8-9 clothing. I hope your wee one gets better soon, thinking of you.

[Rockinhippy]

Thinking of you & your little man Freckles hoping that you are coping well & that he's on the mend

Xxx

[Frecklesandspecs]

Checking back in day 3 just to thankyou all for sharing and the lovely messages of support. I wish I could address each one of you but I'm completely zonked out!!
I've since learnt that in hdu you can stay with bubs but not in Icu.
I'm still in the lively room they gave me and bubs is still in Icu. Not much change but hanging in there.
He is still under constant sedation and it is really harf seing him like this so in fact I'm now glad I have my own room. Horrid as that sounds.
There has been a complication with a line they put in his hand. Hes got a clot and one of his fingers has turned purple so he is also now on anticoags!
I really hope he doesn't have to lose anything. I keep thinking they may need to amputate if it doesn't get better soon for risk of gangrene.


Its a horrid, testing time for anyone but I'm trying to just tell myself he is in good hands.
Xxp

[saffronwblue]

Thinking of you both. Poor little boy but he is in the best hands. Remember that you need to eat and drink, sleep if you can and go for little walks outside to get some fresh air.

[Mama1980]

Thinking of you x

[Katiebeau]

Thinking of you both. Come on little man. You can see this off in time for Christmas x

[pudseypie]

Oh freckles it sounds like you are being so so strong. Remember to look after yourself too eat and try and get some sleep if you can. Sending positive thoughts and big unmumsnetty hugs to you and little man x

[Womnaleplus]

Sending best wishes here too x

[Mintyy]

Freckles - I live near Kings. Please let me know if I can do anything to help you.

[Elibean]

Thinking of you, Freckles. Hopefully this is the 'dark before the dawn' part - I remember it well.

The clot and purple finger sounds like an extra worry you could do without, but as you say he's in the best hands and hopefully the anticoags will do the trick....hang in there sweetheart, and get as much rest as you can. You'll need your energy when you're home with a recovering ds xxx

[Elibean]

ps I wasn't allowed to stay with dd in HDU and had a room in the hospital's 'hotel' on another floor...I felt the same, it was a relief to get away and feel separate for a few hours each day, it's a very very intense time. Doesn't sound awful, sounds normal xx

[spiderlight]

Oh, poor lamb. I hope his finger improves on the anticoagulants. Sending you all the good thoughts and strength I can muster.

[OfficeSupplies]

Sending you some good thoughts too, he is in the best place and anticoagulants are effective. One of mine had some and they resolved the issue quite quickly hoping they do for you too.