Update on Jasmin

[jasmin's mom]

Hi All,

We just got back from a followup up at MEEI....Good news is that the swelling from the LTR has decreased so that they were able to get a good look at her airway. There is nothing wrong with her epiglottis (which was a possiblity last month---but swelling was what was making it look questionable). However, we did have some disappointing news!!!! She has a new diagnosis....trachealmalacia..............That's why we haven't heard any vocalizations, and the trach will stay in longer than next summer as the trachealmalacia needs to correct itself.

We go back to Boston in six months.
She was fitted for a Passey-Muir valve, which she currently does not like, but what's new she doesn't like or keep on her HME.

Sending :hug: :pray: to all.

[Isaac'sMomandDad]

Oh I'm sorry to hear about your new diagnosis! I hope with the PMV she can start making some noise.

Lara

[JacobKaden]

Sorry about the new diagnosis - ugh!:hug:

[alizesmom]

It's always something. Sorry. Karen

[suzanne2545]

AARGH. So frustrating to hear new news like this. You have my sympathy.

Suzanne

[JWorthington]

Sorry to hear your news :( Hope the pmv helps.

Juliex

[Kaylie]

oh, i am sorry about the news.. but glad about the results from the LTP. Kaylie has tracheomalacia as well, hers was at one point extremely bad, but thru time has gotten better. she too could not vocalize for at least a year and half, but she sure lets that be known now, she is so loud, and it will happen for you guys too.. little tidbit, u can get decanned with malacia, it depends on the severity of it, Kaylie was actually going to be decanned this summer, but then we requested a sleep study and that was a night mare she was diagnosed with OSA and with those results the decan was cancelled. i know how you must be feeling, but stay strong and know that it is possible to get decanned, and time and growth will help that. so hang in there and good luck with the passy...