....too much

[tcleary]

I post on a board with some moms whose kids mainly have heart problems, but also have other issues.  There is one little boy who has the same heart condition as Garrett.  He has always had more problems and is still on a feeding tube.  They just found out that his heart is still not squeezing adequately and his saturation level is at 60% instead of in the upper 80%.  There options are to be in a study - he might get the drug, he might get the placebo - or place him on a transplant list.  This last visit in the hospital he was terrified, as we can totally relate.  Each time the door opened, a nurse, or doctor appeared he screamed.  He is just over 10mo. They have decided to let him go.  He is terrified of being in the hospital and he would be waiting for a heart that might never come.  There is a little boy who was in TCH each time we were, waiting on a heart transplant.  He's been there a long long time.

I wish Mandi were closer so I could go over and be there for her.  I CAN imagine this, as I have replayed it in my head for over a year.  This hits so close to home, even though Garrett is so healthy, it's still so scary.