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After five days in hospital, emkana's Sebastian has just had his second homecoming

72 replies

emkana · 26/06/2006 16:50

First of all, thanks for all the messages I received on the birth announcement thread last week. I appreciated every one of them!

Secondly, an update on how we are. Last Wednesday I became increasingly concerned about ds's breathing, because it seemed very fast and laboured. When the midwife came she phoned the hospital straightaway, and we went to the paediatric ward where they kept us there and then. Over the next few days ds was dependent on oxygen, was given IV antibiotics and had all sorts of horrible investigations done to him, including various blood tests (his poor heel is pricked to bits) and a gastric tube down his throat, and a full skeletal x-ray.
The outcome was that he had viral pneumonia. He is now better and we are home again, but many, many questions remain over what brought this pneumonia on and what his general condition is. Today we saw a geneticist who is going to try and get to the bottom of it, but like so many of the other doctors we saw in hospital he said that he wasn't an expert in skeletal dysplasias and that it would probably take quite a long time until a final diagnosis could be made.

I've been to hell and back over the last few days, fearing that this was my worst nightmare turning into reality, then gradually feeling slightly more hopeful again as he improved. I am now happy to be home with him again, but also very fearful if he's going to be okay or if there is a setback just around the corner.

I'll just have to take it one day at a time, I guess.

OP posts:
essbee · 26/06/2006 18:07

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lazycow · 26/06/2006 18:11

Sounds like an awful time but I'm glad you are home now.

You must be exhausted and very worried. I hope you get some answers soon and that things level out.

donnie · 26/06/2006 18:12

you must be so tired as well emkana. Really hope you are managing to get some rest - you have just given birth and really need to recover.

Sounds like the Doctors are a good bunch anyway.

tamum · 26/06/2006 18:16

Oh, emkana. I have been wondering how you were doing; I am so sorry it's been so traumatic. Is there any chance of seeing the woman who did the scan again? (can't remember her name, sorry). I also found out recently that Peter Scambler at ICH is actively researching Jeune syndrome as a geneticist; maybe he would be worth a try? Just drop me an email if I can do anything. Thinking of you.

Pixiefish · 26/06/2006 18:18

love and hugs emkana

SenoraPostrophe · 26/06/2006 18:19

I didn't see your birth thread so congratulations!

hope things calm down for you now, though. it sounds like he's a fighter.

Blu · 26/06/2006 18:20

Emkana, you must have been frightened ridgid. i'm so sorry - but very pleased he is home again and better. Hugs to you all.

RubyRioja · 26/06/2006 18:20

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ScummyMummy · 26/06/2006 18:22

Oh emkana- that must have been very very frightening. Glad he has come through. Really hope you can enjoy the next few weeks on an even keel and that you get some reassuring answers as soon as humanly possible.

thewomanwhothoughtshewasahat · 26/06/2006 18:22

not sure what to add Emkana. just that I think of you and your family. One day at a time sounds like a very good philosophy. Try to keep it up and try to take time to look after yourself

MerlinsBeard · 26/06/2006 18:23

Been wondering how you were...is there anyone with you supporting u in person? worried for you too.

frogs · 26/06/2006 18:23

Oh emkana, had been wondering what was happening for you and Sebastian. Hope you can get some rest over the next few days to just enjoy him, and that it was just a blip and he'll do fine now.

Hugs

poptot · 26/06/2006 22:52

Just wanted to say thinking of you and glad Sebastian is home, what a worrying time for yuo.

pupuce · 26/06/2006 23:01

Emakana- that's it - you said it yourself... take it one day at the time... no one can predict, enjoy and care for him one day at the time. Good luck !

trefusis · 26/06/2006 23:12

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hunkermunker · 26/06/2006 23:14

Oh, Emkana! Glad DS is home with you now.

Much love x x x

Jimjamskeepingoffvaxthreads · 26/06/2006 23:18

I missed your birth announcement (was away), thinking of you and Sebastian and hope you don't have to wait too long for answers. Remember the SN board as well, lots of experience of going through the whole "is he isn't he?" and long roads to diagnosis. xxx

Dior · 26/06/2006 23:23

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schneebly · 26/06/2006 23:25

Pleased he is home with you now em - sorry you have all had to go through this! As you said yourself it is best to take one day at a time and just enjoy getting to know your new son. Best wishes for now and the future. xxx

Ellbell · 26/06/2006 23:27

Oh emkana, you must have been so worried. I'm glad that he is back home with you again now and I hope that he continues to go from strength to strength. I'm thinking about you.

Christie · 26/06/2006 23:31

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Clary · 27/06/2006 00:12

You are all in my thoughts emkana, hoping you get some positive news soon.
claryx

Lact8 · 27/06/2006 00:25

Sorry to hear he's been so poorly but glad that he's home with you and your family again. Take care xxx

VVVQV · 27/06/2006 00:32

Oh im sorry you have had to go through so much stress and anxiety. Im glad he is on the mend.

Best wishes to you all.

xxx

ernest · 27/06/2006 09:54

so sorry to hear your news emkana. very glad he's back home. the not knowing must be so hard. wishing you all the best for hi growing stronger and stronger, so you can get on with the whole business of enjoying him without the stress and fear.xxx