Sam is in surgery now getting his g-tube placed.
Anesthesia and surgery is very risky for VWM kids. Whenever Sam has had anesthesia in the past it has caused uncontrollable post-op fevers and led to a decline. We took all the precautions we possible could this time. He was admitted early to keep him hydrated and nourished and we have specified using an anesthesia that other VWM kids have tolerated well.
We also decided to have the surgery in Philadelphia rather than closer to home so that if there are any complications, his Leukodystrophy team is in the same hospital and can help us manage his care.
We are nervous, but the feeding tube is absolutely necessary at this stage. He has lost 15 pounds in the last year and in the last 2-3 months we have seen a significant drop in his appetite. He no longer gets hungry very often and when he does eat he gets full after just a few bites.
Keep Sam in your thoughts, hopefully it will all go smoothly!
Sam vs. VWM 