Being straight about it-
Austin does not have Tetrology Of Fallot (TOF), he has a heart defect LIKE TOF, but it is more rare and more severe. So pretty much they will need to do the surgery as soon a possible. The chances of the surgery working is a 70% to 95% chance. The doctor also said that the first surgery will be the hardest, depending on how small the Pulmonary valve is (I think that's what it's called I just looked at a picture of a heart and guessed the name. Th hearts in google look more complex than the one he drew for us. Anyway since he doesn't have the part of the Pulmonary valve (I think) that connects to the other valve the are going to have to switch it throughout his life, because it won't grow with him. They said that they'll have to be from doners. He'll have to get one as a baby (a few weeks after the first surgery), one as a child, a teenager, and an adult. I mean They'll monitor him to see when they need to switch it. The doctor said that once he's an adult he will only need one surgery and then he'll be done. But he isn't going to have as normal of a life as we had hoped for him. But he will probably life a good long life so that's all we hope for. I REALLY hope the first surgery isn't as hard as he thinks. He think that the part of the pulmonary valve that he does have is really thin. He said he couldn't really see it in the ultrasound. So that has me worried.
2 comments:
I am sorry you are having a deal with all of this. I miss you and I am so glad you are coming home for a while. Hopefully I can get to NY ASAP to see you and Lily.
Do you know anything about the cord blood banking thing? Ive been looking into it alot and I'm going to do it for Ashlynn. You should really do that too. I dunno if it could help with anything related to his condition in the future but I know it can help with a whole lot of things that could come up in someones life.
Post a Comment