Patty - TP-ICT

[Guest guest]

Patty,

I agree that it probably is better to consider the surgery before

Cassie gets very ill. Most importantly is the fact that the more

islets there are to transplant, the better the chance of avoiding

diabetes. The longer you live with the disease, the more damage

there is to the pancreas and the islets. Joey had his surgery at

Boston Children's. He was the first (and only, so far). I'm sure

you'll hear from Peg, but Brandan had his surgery done in MN by Dr.

Sutherland. I think Joey's situation was a little different, because

he had such a history of GI & many other medical problems. He had

surgery for reflux and had a G-tube most of his life. The prior

surgery made things a little more difficult. The doctor tried, but

was unable to save his spleen during the procedure. After his

surgery he had his g-tube, a j-tube, an NG tube, 2 drains, a foley, a

triple-lumen central line, an arterial line and peripheral IV's. He

was on a ventilator for the first 24 hours and the day after removing

him from the vent his lung collapsed. I don't believe that this is

the norm. Joey was very sick before his surgery. Most of his tubes

were out fairly quickly and he left the hospital with only his G & J

tubes. He wound up spending 6 weeks in the hospital, but it was

during summer vacation. We started out feeding him small amounts of

diluted formula thru his g-tube, but he had not eaten or drank for 8

months at that point. What shocked me the most was that within days

of his surgery, he was rating his pain lower than he had just days

before. And he would do it over again in a heartbeat! We consider

it a miracle. Please feel free to email me directly if you or Cassie

have any more questions. I would love to share more with you, but I

have already written a book here.

Suzanne