Friday, September 16, 2011
8 weeks into this mess!
So much has happened I don't even know where to begin. I won't go into a lot of detail. We had a bad experience with Lucy's surgeon and we got another guy for the time being. We sent Lucy's records to the best surgeon in the world for Lucy's particular needs. He thinks he can do the surgery and that it will help Lucy. He wants her to come as soon as possible. We have to wait for insurance approval which could end up taking weeks. If it happens sooner than that they'll wait to fix her diaphragm at the same time as her open heart surgery. If it takes awhile they'll do her diaphragm surgery here. She needs it operated on because of a surgical complication from her last open heart surgery. We weren't expecting them to want to reoperate so soon. We thought she'd be coming home first. I was a little shaken when I heard the news but I really believe this is her best hope for a healthy life. The doctor I spoke with yesterday said things like "you don't have to do this. You can choose to stop now if you don't want this for her. " Unless you've been through something like this it's hard to understand how much a child fights. One reason Chuck and I have held it together through this is because Lucy seems to know what she has to do and she sucks it up. She fights everyday. And the days she's tired and doesn't want to try, it weighs on us. We are all tired of watching our little girl live in the hospital and get cut open again and again but we really feel like there is hope for her. Lucy will most likely be flying to Stanford. We're hoping to be able to stay at a Ronald McDonald House. I don't even want to think about how we're gonna get through this one.