| Hello we have a Daughter with Down Syndrome,she is 4 years old now when she was about 6 mos.she had heart sugery the wall was missing in her heart and she had a couple holes in her heart. My Husband prayed all the time and handed it over to god he sleped in the waiting room and I on the other hand stayed awake , the doctor kept coming out to me letting me no how it was going about every ten minutes and the last time he came out to me he told me they are done and she is going to a room wear we could see her they left a small hole in her heart and startde her on like 4 meds and now she still has a small hole in her heart they call a mermer but she is doing great. and she now is on only 1 med and in 6 mos she will be off of all of them , now after your son gets his heart repair they will teach you how to clean the tubes that will be hanging out of his chest for a little bit they might even send him home with them and have you come in later to get them out , that is wear we ran into a problem when they said we could take our daughter home we got ready went up to get her on the way to her room the doctor stoped us and said she had pulled out her tubes from her own chest so she had to stay a couple more weeks , buut every thing is fine with her she is doing great, we had her repair done at childrens mercy Hospital Hill in Kansas city mo, This is a great hosptial, If you would like to no more just let me no. ↑ |
| i have an amazing boy, Brandon who is twelve now. He had 2 small holes in his heart that closed on their own but he has hypothyroidism and celiac disease. I think the best advice I can give you is take things day by day. Before I did this I felt overwelmed...too much information about what could go wrong...no two children with Down Syndrome are exactly alike...cry when you need to and support each other....but from a mom who has been there, he is going to amaze you in ways you may never have thought possible. ↑ |
