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AIBU?

to want to know whats wrong with my baby son?

37 replies

thecatsarecrazy · 07/02/2017 10:29

I'm currently in Bristol children's hospital, approximately 2hours away from home. I was sent here by our local hospital because they thought d.s might have a floppy larynx and our hospital doesn't have an e.n.t department.
We have been here since Saturday night, he was looked at yesterday with a camera up his nose but they said its all normal. So back to square one. Since we have been here he's been fed through a tube and slept. While he's sleeping he's fine but when I give him a bottle or cuddle he struggles for breath. I hate seeing him like this. They keep referring to his problem as reflux but I don't think its that, the nurse last night kept saying things like perhaps he has a cold coming . I'm going out of my mind stuck here wanting my 11 day old baby home and well, I'm missing d.h and my 2 other sons. There's a whole family in bay opposite and the dad is using it as an office making calls and on his laptop.

OP posts:

Report

SleepFreeZone · 20/02/2017 07:14

Thinking of you too OP💐

Sukitakeitoff · 20/02/2017 06:40

Thinking of you - hope your little boy improves soon

MadisonAvenue · 20/02/2017 00:45

Hope you get answers soon and that he's soon well enough to go home

heartisshattered · 19/02/2017 21:52

Sorry to hear that cat

Will keep you in my thoughts and pray the little one is given a diagnosis and improves

greathat · 19/02/2017 21:47

Sounds very scary. Hope you are both ok

BToperator · 19/02/2017 21:45

It sounds like you've had a horrendous time of it. I hope they work out what the problem is soon, and your DS is back home where he belongs.

Cheekychops73 · 19/02/2017 21:41

Didn't want to read and run. I hope that they get to bottom of what's going on and you and your wee one get to go home soon. Take care of yourself too.

PumpkinPie2016 · 19/02/2017 21:37

Couldn't read and run - sending you and your little one good wishes

I hope you get some answers soon and your little boy is well enough to go home x

thecatsarecrazy · 19/02/2017 21:24

Thank you every one. They suspected in our local hospital that he had swelling that had made the breathing worse. They had him in intensive care and fitted a breathing tube using a camera and could see there was.

OP posts:

Notanotherpawpatrol · 19/02/2017 21:22

I'm so sorry to read this. I wish I had seen it earlier, I was at the maternity hospital earlier, I would have popped in to see you and made sure you had everything you needed :(
I hope you are looking after yourself too

OopsDearyMe · 19/02/2017 21:07

At that age there can be numerous reasons and because baby can't tell you what's going on, it can be a case of eliminating the obvious first. I will say first off, take a breath and remember that they have not sent you home with a diagnosis of reflux, they are working on it as the most obvious and watching, that's a good thing. Keep communicating with them when you feel that they may be a bit off track, paeds drs unless very very new or on rotation and inexperienced, are well aware that especially at this age , Mum knows the child the best and they will take on board what you say, they also however has a wealth of knowledge behind them at might make sense to them and not you. Yet.

Its worrying I know, but baby is doing OK and you are meant to worry.. All good ones do... Be strong.

Theyhaveallbeenused2 · 19/02/2017 21:07

Didn't want to read and run. Hope little one gets well soon.

Toomuchocolate · 19/02/2017 21:04

Oh my goodness that sounds so scary. Are they any closer to finding out what's going on?

Prettybaffled · 19/02/2017 21:04

Cats thinking of you both

RandomMess · 19/02/2017 21:02

so sorry to read that he's deteriorated I was hoping for a positive update

thinking of you

Wheredidallthejaffacakesgo · 19/02/2017 20:59

This reply has been deleted

Message withdrawn at poster's request.

Allfednonedead · 19/02/2017 20:58

Oh no, that's so scary. You poor loves, it must be really disheartening to be back.
Hopefully they'll be really on the case now, searching for any possible cause.
Wishing you and the little one all the best.

thecatsarecrazy · 19/02/2017 20:54

He has had chest x rays, ecg, echocardiogram, swallow test, all came back fine. We were told we could go back to our local hospital, was there one night and he got worse. He's now back in Bristol in intensive care.

OP posts:

Notanotherpawpatrol · 10/02/2017 07:54

Just stoping by to say I hope you get some answers today. Xx

MagicMoments22 · 09/02/2017 22:20

Didn't want to read and run they are checking all they can I'm sure they want to know as much as you

thecatsarecrazy · 09/02/2017 21:20

He's being looked at tomorrow afternoon. I hope we get some answers then

OP posts:

mygorgeousmilo · 09/02/2017 18:04

Any news OP?

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thecatsarecrazy · 08/02/2017 18:29

Its so frustrating. They go from telling you one thing to another. I thought I would be going back to local hospital today then I thought something may happen tomorrow now its Friday and that's not for sure that's if they have a slot. Seeing how expensive it is to have people in hospital you would think they would want us out.

OP posts:

ihearttc · 08/02/2017 17:29

DS2 had stridor when he was small (He still has it now). Doctors originally thought he had Laryngomalacia (floppy larynx) and that he would grow out of it. By the time he was 12 months it was still there so they gave him a GA and looked down and his larynx was ok. They then decided to give him a barium swallow...at which point I had 3 radiographers rush into the room. He has something called an ARSA (Aberrant Right Subclavian Artery). Basically the right subclavian artery has come off the aortic arch in the wrong place and has grown against his osophagus and trachea which causes the stridor.

We then went to GOSH and they did a CT to establish if it was an complete vascular ring which it wasn't. To correct the ARSA involved quite major open heart surgery and apart from the stridor he had no other symptoms even though on the scan his oesophagus was narrowed quite significantly. He is now 6 years old and the stridor has virtually gone. He is doing really well at school and you wouldn't think there is anything wrong with him. We haven't had the operation at all as yet.

Im wondering if thats what they may be looking for when they have said they will look further down...it would appear below the larynx so wouldn't be visible if they just looked at that. Feel free to PM if I can help at all.

Notanotherpawpatrol · 08/02/2017 17:21

Oh and don't wait for the nurse's to offer to look after him, tell them you just want to pop to m&s or boots to grab something and you'll be 10 minutes and get out and clear your head. Even if it is to wonder round the shopping street that is in the BRI XX

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