Please share your experiences with Hirschsprung’s Disease with the community.
My wife and I recieved custody of our grandson when he was 18 months old and he is now 7 years old. He has had a feeding tube (mickey) and colostomy since he was 3 months old. 2 years ago he had a bowel obstruction and had to have most of what remained of his intestine removed so he now has a central line. We cycle his TPN every 12 hours. He is in the first grade and doing great. He is active in school, church and plays t-ball. We are in hopes that his intestine grows enough that we can eventually loose the central line. That is our prayer. Last year we had 4 infections in his central line but blessed to say no infections this year.