I have a 10 month old daughter, she's diagnosed with Alobar Holoprosencephaly and Hydrocephalus. So far she has had 6 surgeries. G-tube, fundoplication, VP shunt, VP shunt revision, fundo re-do and on April 26, 2012 she had her adenoids taken out. She has been in the hospital ever since the surgery and just recently got diagnosed with tracheomalacia. They want to do a tracheotomy so that she can come home. Me and my husband are willing to go along with the surgery so she can have a better quality of life, but im just really scared about it. I don't know anything about a trach and the thought of it is really scary. They said she doesn't need to be on oxygen with it, but im still really worried. If anyone could give me some advice or anything i'd really appreciate it. 
are you going on a vacation this summer , where ?
- hcannon28
on May. 8, 2012 at 12:10 AM