My daughter Sienna had a tracheostomy dont yesterday. She has been in hospital since she was born (she is now 20 weeks old and was 8 weeks premature).

She still has a long way to go yet, she is still being ventilated through the tracheostomy.

Just wondered if any other mums have babies who have or who had tracheostomies and how you cope with them.

She may only need it temporarily but they've mentioned that it could also end up long term.

Any replies would be great, thanks x

Hey love,

Have been meaning to get on here for ages and see how ickle Sienna is doing - is this tracheostomy thing for her breathing? Was she having probs with this before or is this a new thing?

On the plus side, I have seen children on TV who've had this done and been able to go home with it - think they just had to lug the kit around with them wherever they went! But totally 'doable' if she does have to have it long term. Hope you're being able to keep your chin up - we were in Birmingham Children's Hospital over the bank holiday with George (while they investigated this liver thing) - brought lots of memories of special care flooding back - what is it about that hospital smell??

Take care,

Sarah x

Thanks for reply, was wondering how you were getting on.
How did the tests for his liver function go? Any more ideas yet? How is George doing now apart from that?

Dont even know where to begin with Sienna at the moment.........

Shes been through it a lot lately, we just don't know what the future holds.

Keeping everything crossed but taking each day as it comes.

I know the hospital smell can't escape it at the moment, hospitals are driving me mad! And the beeping of all the alarms.

I posted in 'born in june 08' a bit more of an update, cos thats when she was due! But was actually 'born in april 08!

How r u doing?

Hi,

I'm fine - now I've recovered from our stay in hospital!! Not used to broken nights sleep anymore!!

George is doing fine - they're still no nearer finding out what the liver thing is, although the levels that were going up have now started coming down which is good. An ultrasound scan showed that everything internally looks normal, and apparently 50% of these cases are never diagnosed and just sort of go away on their own! Random!!

We did have one sort of setback when he was in, with his feeding - he's been on 4 8oz bottles a day and sleeping 12 hours straight for about 4/5 weeks - when the nurses were doing his routine obs they found that his blood sugar level was dipping dangerously low overnight - so we've had to put a night feed back in - although not too bad as we do it about 10.30/11 so just stay up a bit later!! He doesn't take much - usually 2/3oz - but that seems to be enough. His paediatrician thinks its age related and nothing medical - and he sleeps through it, so not helpful for the winding!

Sorry to hear about all that you're having to go through - I remember how crap it was being in hospital with him, and we were only in for 10 days - can't imagine what you're going through. Suppose you're sort of in a routine with it now? I just think that with these icklies 'what will be will be' - somebody somewhere has a plan for us (and I'm not religious or anything!) - Sienna certainly sounds like a fighter, she's come this far and isn't giving up by the sounds of it!!

Keep me updated - George sends a big sloppy kiss for her!

Sarah x

My little brother had one back in the late 80's as a baby. He had it til he was a bout 4 years old due to other problems... but my mum was able to care for him at home with the support of the district nurses... As a consequence of having the trachy so long, his speech was delayed, and is still affected now... But he has special needs which also affect that...
Hope it all works out (know this is a fairly old post, so maybe you'll get this, maybe you won't). x x x

Hi MrsV

It not really my place to say but dont think Glitterstargirl comes on this bit now, sadly little Sienna went back to the angels not long after this post was written.

Our thoughts and prayers are with her and her family

xxDBxx

I'm so sorry, I've only just rechecked this thread. I'm so so sorry glitterstar girl, and thanks doublebubble for letting me know x

MrsV, its ok you weren't to know. Thanks DB for the thoughts and prayers, it really means a lot to us, we're really having a difficult time with it at the moment.
x