I won't rehash what Scott wrote earlier this week regarding Eden's transport. But I will provide a little view from where I was. It was the most terrifying 3 1/2 hours of my life. We have seen a lot during our time in the hospital, Eden has coded, turned blue then gray many times but when we're up in the air and she's being bagged and her sats are still poor theres no where to go. I prayed the entire flight. When we finally got on the ground I felt a moment of relief until I saw her- she was gray when they were moving her from the plane to the ambulance- she was bradycardic (dropped her heartrate) and her oxygen sats were really low. The team was very worried about her when she arrived. The transport was VERY hard on her.
Texas Children's Hospital (TCH) is very different. It's a teaching hospital, so there are always new, young faces. It will take some getting used to as I am so familiar with our more "seasoned" MD's in Minneapolis. We are also in the PICU, it's loud here and there are NO accommodations for parents. On a more positive note, it is beautiful here sun, green grass, flowers, palm trees, and warmth. It is wonderful for my mental health. I usually walk the 1 mile to the hospital instead of taking a shuttle.
Eden has had her up's and down's. She was stabilizing nicely yesterday without having the paralytic, but had a very rough night. She was bagged at least 6 times and they put her back on a continuous dose of the paralytic. I hate it. The goal is to get her off the paralytic and more stabilized so that they can continue evaluating her for the lung transplant. I have met with all three of the transplant MD's and had long conversations about this entire process. They want to make sure that her lungs are not recoverable and that transplant is the only option remaining. They are very frank about survival, success rates, and long-term prognosis. It's difficult to hear sometimes, but we feel strongly in our hearts that Eden is meant to be here and she is very special and will make a major impact throughout her life. We also know that God is watching over her everyday and he loves her and will do what's best for her.
A few things: PLEASE pray for stability for Eden, a quick decision for her being put on the list, and a short wait for lungs.
Also, if you are not an organ donor PLEASE consider it for yourself and your children. I will provide more information later about organ donation.
Thank you to everyone for thinking about us, praying for us, providing meals for Scott and overall being a support system. We need it.
oh amanda...i don't know how you are holding it together. I don't know what i'd do if i were you. I wish i could be there for you while you are in TX. It must be very hard on you being away from your support grp and your sweet little baby. I pray for Eden everyday. You are always in my thoughts. I agree with you, Eden is meant to be here and will do great things with her life. I pray she gets the transplant very soon :)
ReplyDeleteAmanda,
ReplyDeleteI am a fellow Bump mom from the October 2010 board and have been following your blog since you had the girls. I actually live in Houston. Anyhow, there is a place called the Ronald McDonald house that houses families of sick children near the medical center. My church small group is actually volunteering there this Friday. Anyhow, I'm not sure what the criteria is for staying there, but you may want to look into it. I will be praying for y'all, I know this is already a hard enough situation without having to deal with being alone in a completely new environment. I pray Eden stabilizes soon, that the doctor's are amazed at her quick progress, and that the doors are opened for Eden to either get new lungs or make a miraculous recovery. I pray that God will blow those doors open in a way that only He can do!
-Jen