Posted by Angela
on 11/10/2008, 2:08 pm, in reply to "need some help"
71.187.181.52
HI, that is weird! I'd be seeking lots of other opinions as well. Not sure where you are, but we have had a fabulous experience with the team at CHOP in Philadelphia. My daughter was trached at 7 weeks and decannulated at 22mos.
I'd also say, depending on the severity of his airway problems, the team at Cincinatti Childrens. They are renowned as being the "epicenter of the airway universe".
best of luck!
--Previous Message--
: Hi all! I have written here in a long time!
: My problem is as follows! My son is 10 and
: has PRS along with Autism. We have had all
: the regular surgeries so far: palate repair,
: trach put in at 21 days old, jaw distraction
: at 2, trach removal at 2, then trach put
: back in at 6 and jaw advancement. My
: problem is this- the hospital and group we
: go to sys to us the other day-- I am not
: kidding- word for word-- gee, this isnt
: right, he shouldnt have this trach in now.
: we are stumped-- well, good luck to you.
:
: ok--- I am not a mom who is just going to
: sit back and say ok-- he will just have the
: trach for life I am through.
:
: Anyone have any wonderful docs they would
: like to share? I donty mind traveling!
: Thanks!
:
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