Ally,
Our prayers are with you. I cant give any advice other than be there for each other and have a LOT of faith in gods hands. I am in the same boat as you are. My wife is a congeital heart defect pt and had TGA done in 1963-1964, it was one of the first in the nation. Now we are getting word that she should have possibly been on a transplant list since this was done. They do NOT even use this procedure any more. I am scared beyond words and am tired of all the Dr.'s and she is to the point of dreading to go to the Dr. every time an appointment comes up. I like you am looking for advice similiar happenings or siomething to help get through this. Will keep you updated on how things go. May God be with you and yours.