Guest guest Posted January 13, 2001 Report Share Posted January 13, 2001 Betsy, I'm not much help with the trach stuff, but I'm glad to hear the jaw distraction was successful and he is wearing the passy for 10-12 hrs a day. That's great! I hope his pneumonia gets better soon and hope that "D" word gets discussed a whole lot more real soon! Mom to Kennedy 2.5yr old CHARGEr, 11, 9, and wife to GraemeNew Brunswick, CanadaVisit the "Weir homepage" at: http://www.geocities.com/kawfolksICQ #1426476 Passy/aspirate/cuff Hi everyone,What a day - or should I say what a past couple of months! has yet another aspiration pneumonia! Ugh. I thought we were finally on the upswing: successful jaw distraction and success wearing the passy 10-12 hours a day and evidence of a swallow (though a swallow study still needs to be done to confirm). The ent even talked of the "D" word. But remember I was disbelieving of decannulation - too much work left to be done and I also don't want my hopes getting shattered. Well, it's clear that decannulation is very back burner. had a CT scan done of his lungs and there is evidence of a current pneumonia and bronchiectisis (lung damage). He is set for a palate repair in 10 days and even though he has pneumonia the doc said providing he doesn't have a fever to go ahead b/c at this point he'll never be cleared b/c of the chronic pneum. After the surgery she wants the cuff trach put in and I think at this point I am waving the white flag to it. I am tired of the chronic wheezing and all that is associated witht the pneum. and I worry for his lungs. what I hope for is that the swallow study will show he does fine with the passy on so the cuff can be deflated but when ever he has the passy off ie:sleeping that the cuff gets inflated. Also hopefully the palate repair will help with his swallow. I am pretty discouraged by this all. Once again you get your hopes up just a little and they get shot down - way down. so tell me, does anyone aspirate while wearing the passy? Anyone have bronchiectisis? Anyone's swallow improve after a palate repair?Betsy"5th International CHARGE Syndrome Conference, Indianapolis, Indiana, July20-22, 2001. Information will be available first in CHARGE Accounts, theCHARGE Syndrome Foundation's newsletter."For information about the CHARGE Syndrome Foundation or to become a member (and get the newsletter)please contact marion@... or visit the CHARGE Syndrome Foundation web page at http://www.chargesyndrome.org Quote Link to comment Share on other sites More sharing options...
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