March 20th: I am re-posting my blog from one year ago today- we were officially approved to travel to Texas for a lung transplant for Eden. You can read from the post the hope but also the worry in my words. It was a huge success to finally get approved after literally dozens of phone calls, tears and prayers but we knew this was the only thing we could do to save Eden's life. There was never any question of IF we do a lung transplant but HOW FAST we could get it done.
March 20th, 2011: Eden has been approved for transport to TX and evaluation in TX for a lung transplant! They will be coming to get her early this week!! TX wanted us to be crystal clear that just because she is going there does not mean that she WILL get new lungs. They will do a barrage of tests once we arrive to determine IF indeed she is a candidate for transplant. Once she is approved the waiting will begin.
Scott and I made the very difficult decision of how to make this work for our family. Scott will become a single dad and will be staying here with Reagan- she is too medically fragile to travel, she has nursing care here and her MD's who know her here. I will be with Eden in TX. He will be able to come and visit every few weeks and hopefully I will come home a few times as well.
The sooner we get to TX the better for Eden. She is completely sedated but still has episodes of dropping her heartrate and O2 levels. This is very scary because it puts her in a very unstable position. We worry every time our phone rings that we will need to rush to the hospital. And it’s heartbreaking to see her sedated when just last week she was smiling and laughing.
So as we embark on our journey to TX please pray for a few things:
• A safe and uneventful transport there.
• Her evaluation to go well with little pain or episodes.
• And that she will be approved for transplant
Hi Amanda,
ReplyDeleteIt feels like it was just yesterday that I was reading these words for the first time and sharing in your hope and fear. I know it is hard to believe that a year has passed. Some days, it doesn't seem possible that our worlds didn't stop when we said goodbye to our children. I know this month is hard. I absolutely love that you are doing a post each day in Eden's memory. Thank you for sharing her with all of us and keeping her special spirit in our lives through your words. She lives on through you, Scott and Reagan. Wrapping you in a big virtual hug each day this month. I'm here if you need a friend.
Sending lots of love,
Steph
Amanda, Scott and Reagan,
ReplyDeleteMay you continue to feel the loving arms of God keeping you in His tender and awesome care. These are the very same arms which now encircle your beautiful daughter. Our prayers contine to rise to the Throne for you all, especially as the 1st year mark approaches.
Sister in Christ