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to want to know whats wrong with my baby son?

(38 Posts)
thecatsarecrazy Tue 07-Feb-17 10:29:35

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 hmm. 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. sad

NavyandWhite Tue 07-Feb-17 10:31:09

You poor thing. Hope you get some answers soon flowers

Allthewaves Tue 07-Feb-17 10:57:51

Huge hugs. Your both in the best place - horrible that your so far away from home.

thecatsarecrazy Wed 08-Feb-17 07:42:09

They haven't found out what's wrong and are sending us back to our hospital. sad

contractor6 Wed 08-Feb-17 07:46:10

flowers hope they find out soon

Miserylovescompany2 Wed 08-Feb-17 08:02:53

I hope you get some answers soon. I couldn't just read and run...(sending a huge hug) x

user1471537877 Wed 08-Feb-17 08:27:01

Please try not to worry too much, I used to work in paediatric theatres and we fairly frequently scoped babies in this situation

Most times nothing was discovered and the babies eventually matured enough that the problem stopped sometimes they have to learn to not breath when eating

At the moment I assume they are worrying about aspiration but if the ENT chaps have found nothing that's a positive step

With such a young baby and away from your family I can imagine all sorts of worries are going through your mind but hopefully when you're nearer home with family there to support and your other boys to hug it will help

For what it's worth, if they were worried you would be staying in a specialist centre, the fact you're returning to a local hospital seems positive to me

DoubleCarrick Wed 08-Feb-17 08:32:52

I've had exactly this, my baby is now four weeks old. They suspected heart issues but that came back clear. In the end they said that reflux was irritating his airways and where he wasn't protecting his airways very well it was causing his oxygen levels to drop.

We spent 7 days on postnatal, 10 days on children's ward and came home, readmitted for 24 hours and have now been properly home for a week. He seems to have fixed himself

thecatsarecrazy Wed 08-Feb-17 13:27:04

ATM we are still in Bristol. My poor baby is wide awake but if I cuddle him its hard to see him struggling. His sats on machine look good but its the constant noise.
E.n.t came this morning and said they "may" look a bit further down but this would require nil by mouth. So not today. I don't know my arse from my elbow atm

JCo24 Wed 08-Feb-17 15:45:14

Gonna sound super creepy, but do you need anything brought to you?

thecatsarecrazy Wed 08-Feb-17 16:44:24

I'm ok but thank you for asking. I'm just so bored. Sat here watching baby sleep, trips to loo and milk kitchen. I did get to go to costa earlier when nurse offered to watch ds. We are hopefully getting him looked at on Friday at some point.

mygorgeousmilo Wed 08-Feb-17 16:46:51

JCo if I was anywhere near Bristol I would have offered too, you don't sound creepy! OP I hope you get some answers soon, can only imagine how worried and stressed you are. My only suggestion is don't let them push you out of the hospital unless you're truly confident that he's fine, I'm just sorry you're going through this flowers

Notanotherpawpatrol Wed 08-Feb-17 17:19:44

Oh sweetie, I got out of there on Sunday after spending 5 days with my dd2, if I was still there I'd be coming to find you!
The not knowing is the worst, as a parent you are already anxious and then they don't really give you answers, it makes it all worse.
Have some in mumnetty hugs {{{}}} I hope you get some answers and get home soon xx

Notanotherpawpatrol Wed 08-Feb-17 17:21:53

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

ihearttc Wed 08-Feb-17 17:29:58

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.

thecatsarecrazy Wed 08-Feb-17 18:29:25

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.

mygorgeousmilo Thu 09-Feb-17 18:04:36

Any news OP?

thecatsarecrazy Thu 09-Feb-17 21:20:03

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

MagicMoments22 Thu 09-Feb-17 22:20:18

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

Notanotherpawpatrol Fri 10-Feb-17 07:54:22

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

thecatsarecrazy Sun 19-Feb-17 20:54:41

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.

Allfednonedead Sun 19-Feb-17 20:58:06

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.

Wheredidallthejaffacakesgo Sun 19-Feb-17 20:59:27

<hugs> to you

RandomMess Sun 19-Feb-17 21:02:17

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

flowers thinking of you

Prettybaffled Sun 19-Feb-17 21:04:07

Cats thinking of you both flowers

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