Posted by Angela on 7/22/2008, 5:39 am, in reply to "Cleft Palate Repair"
72.76.37.40
Hi Megan,
My daughter had her palate repaired at 14 mos. We thought we were prepared for it, since she'd had a tongue/lip adhesion at 3 weeks, but it was definitely harder on her intially. Kate is trached, and had copius secretions initially following the procedure. Three times they tried to move her from the recovery area to the general floor, and all 3 times she ended up back in recovery for excessive bleeding. What happened was that her pain was not controled well, and she would sleep for 15 minutes, we'd think we were in the clear and start moving her, and she'd wake up screaming causing more blood and secretions from everywhere (nose, mouth and trach). Eventually they got her pain controled, but by that time decided she needed to be in the PICU. She spent 1 night there and dicharged the following afternoon. She only got to leave because she had a feeding tube. She refused bottles in the hospital and didn't take anything by mouth for almost 3 weeks after, except the occasional sips of water or milk. Other than the eating difficulties, once home, she recovered quickly. They told us no hands in the mouth or sharp foods or toys and gave us arm restraints. We only used them for a few days. Kate had no interest in putting her hands or anything else in her mouth, so we stopped using them.
Her palate looks great, could never tell anything had ever been wrong. Other than the horror show of pain control, it wasn't too bad.
Good luck!
Angela
PS, she did start eating again, and more than ever!
--Previous Message--
: Hello Everyone. My daughter, Madelyn, was
: born 3/13/07 and spend 66 days in the NICU
: at 3 different hospitals. She was diagnosed
: with an isolated case of PRS. She got a
: trach put in when she was 2 days old and
: then at 6 weeks she had a distraction and
: also a g-tube put in. I'm so happy to report
: that the distraction worked and we were able
: to get her trach out at the same time the
: distraction came out!! If only I had known
: of this sight back then, maybe I wouldn't of
: felt so alone!! We have her palate surgery
: coming up at the end of August and was just
: wondering if anyone could share their
: experience with me about what to expect
: during/after surgery and the how long and
: what the recovery process is like. We have
: a surgeon who is the best at what he does,
: however, he's not much into explaining
: things. Any information on what to expect
: so that I can prepare myself would be great.
:
Message Thread:
« Back to thread