Anyone re pharyngeal flap

[Guest guest]

Hello - I am seeking any parent whose RSS/SGA child has had a pharyngeal flap

surgery in the last 5 years. I myself had it almost 20 years ago, but surgery

techniques have changed dramatically in the last 5 years.

is currently scheduled for surgery Dec. 9th (type of surgery dependent

on the results of an endoscopy on 10/7). The nurse casually said " she will be

NPO the day before, and then come in that morning for surgery. " NOT!!!!

Admit the night before with IV.

Next she says " it's not difficult - she'll be in for 1-2 nights and then when

she can have clear liquids she can go home. " NOT!!! Again, having to explain

that has to have an IV until she can eat FOOD. This is a new story

now!

So I am trying to get an idea of what I am up for. My memories of my surgery

are horrible. I spent 5 days in the hospital, clear liquids, then soft foods

for 2 weeks. After 3 weeks when I could finally eat regular foods, I went

from 102 pounds to 82 pounds (I was 17 yrs old). I simply can not allow this

to happen to after all she has gone through to gain her precious

weight!!!

I am wondering about TPN? I have heard that you can have a port line that

actually provides liquid food/nutrients into the child's body? Does anyone

have experience with this and would it be worthwhile if she can't eat for so

long?

Luckily, we see Dr. H on October 11th, so I am definitely going over

everything with her!

Salem (, age 6 yrs 8 months, GH, Periactin, 43.5 lbs?, 46 " ?)