Emily has her trachy out

[mam2girls]

as you all know emily as had a fair few chest infections since having the trachy especially with the bad weather so i contacted the consultant who saw us a few weeks ago and agreed to try and take it out so we went in last monday.
that monday they reduced the size of the trachy and then blocked it off, we spent the night there with the pulseoximeter beeping away all night as emily wiggles her toes in her sleep so it couldnt get a reading
on the tuesday the consultant told me to remove the trachy so i did and she was fine, i on the other hand could have done with a stiff drink afterwards lol. they put her back on to the pulse ox for 5 mins then just monitored her every hr for a couple of minutes each time, i heard her laugh but she wouldnt make a sound when david was there, had another sleepless night with the pulse ox on and then we were home on wednesday, she had to have gaffa tape over the hole for 48 hours but after i took the tape off i liiked and the hol had already closed up. she has had it out now for a week, she caught a bug in the hospital so has been vomiting for the last 3 days but is doing great today.
since being able to make sounds she thinks she just has to scream to get what she wants and have noticed that when she cries se sounds very nasal so will mention it to the cleft nurse next month when she has her review. not sure whats going to happen with speech therapy whether it will be done thru th cleft team or the paed consultant so will have to find that out too.
im so glad she has it out tho, wil ty and post a pic soon

[mush]

I just cried reading this post, I'll blame the emotional week i'm having!!!
I think the whole process of removing the trachi must be very scary, i think the day they decide to take Pauls out i'll be a nervous wreck!! It must be lovely hearing her make sounds (i think that's the bit that choked me up the most - where's my tissues when i need them?!?!)
Keep us posted on the speech therapy. Well done to you and Emily

[ellorarose]

oh wow that is just great! I know it was stressful getting it out but it is just another step on your journey and all good! Bless her making noises- its just fab!

[dobbin]

That is fantastic news. She is a superstar as ever. Shame about the bug - Emily's twin (James) has been ill with a vomiting bug too since Saturday - he has lost so much weight and he cant afford too. By the way I have a friend who I met in Alder Hey when James was having one of his op's whose little girl has just been diagnosed with Kabuki Syndrome. If she decides she wants to speak to you can I send you a private message with her contact details (I think she is still getting her head around it at the moment).

Love Andrea

[Sarah H]

Wow, how good is that?! I was hoping to hear this news from you sometime soon.
You might find that you get a bit of both for the speech therapy. We are getting mostly non-cleft support since that's what's needed, but the cleft SALT joins the sessions once every few months just to make sure that cleft issues are being addressed. I guess that Emily has got a lot of new sounds exploring to do and that it will take a wee while (hope that she doesn't shout all the time though!).
Hope that she is over the bug soon and that you recover from the sleepless nights.
Take care, Sarah H x

[mam2girls]

thankyou ladies, Emily went to bed singing tonight (at least ithink she was singing )

Jen i was crying when i read your post about the Eye op you and Paul are so brave and cant believe how cute he looks, i cant remember how long you said Paul will have the trachy in for?

Andrea just pm me it will be good to talk to othr people about Kabuki syndrome cos i dont know anyone else who has been diagnosed with it, i cant believe James has a bug too, do you think they have a telepathic link? i know what you mean about loosing weight, wish i had that problem . we have just got her into 9-12 months clothes but the trousers keep falling down lol. how is James doing?
i thought Ems had a hole in the roof of her mouth yesterday but turns out Grace had given her chocolate and it was stuck to it
thanks for the tips for salt, my dad spent 30 mins trying to get her to say mam but she thought it was funny to just ignore himand try to get the sweets that were supposed to be an incentive instead.

i

[Fairy D]

oh how exciting!
it must be a relief to have it out.... although doing it must be terrifying.
well done for remaining sane!
and well done Emily!
hope the vomiting all cleared up now, poor thing!

Daisy xxxx

[carolet]

Wow that is great news! Not so great about the vomiting though, she still likes to keep you on your toes.
Hugs
Carole
xx