Call From Carrie Sunday Afternoon

This afternoon I received a call and email from Carrie. This is her latest update....

"Dear Friends--
We walked in this morning to the hospital to be somewhat blindsided--first by the fact that they were going to go ahead and start the "tests" to take Heath off the heart/lung machine and then a few minutes later (after my facebook status post) when we were told that there were some problems and they were not able to take him off after all. We were then led into a quick meeting with the surgeon and cardiologist to explain that they were worried a bit about his lung function but also that the synchronicity of his heart was not what they needed it to be. They were going to need to do a short surgical procedure to put different wires right into his heart to help it "fire" the way it was supposed to "fire." Needless to say, after such a good strong day yesterday, we felt like we had been hit by a 2x4.
They did the procedure and it was successful. He is doing just fine. This may actually set us closer to being able to get him off the ECMO (this is the heart/lung bypass). Right now we need his lungs to clear out a little more. If things continue to go smoothly this afternoon, they may try to start "weaning" him off the ECMO more slowly. They really would like to have him safely off ECMO before they do the heart transplant, but we realize that we have a way to go before we get there. Of course, if a heart became available, they would not turn it down, but we have to proceed as if there will be some time before that happens.

We have realized that this waiting room is a place where people come with so many stories, so many sorrows. We have talked with many of the people about how this feels like a "club" that no one ever wants to join, but somehow, there have been beautiful moments of care and grace for each other. The love, support and prayers from all of you have made such a difference for us in this crazy day to day roller coaster of emotion for us. Thank you. We love you.

OH YES--Many have asked about Ella Brooks and how she is doing. She is enjoying the days with all of her family--fingerpainting, hide and seeking, eating, playing with new friends and picking out a Christmas tree. She told us that she would like to have our family Christmas tree IN HER ROOM. She didn't get that, but got a small artificial one of her own, complete with lights and paper chains. She went with Mimi and Papa (Chris' parents) to Westminster (Chris' new church), and had a ball playing with the other children. She is in the bear-cub class Tuesday and Thursday mornings at the Westminster Preschool. She is constantly asking about baby Heath - most importantly making sure he is not alone. "Someone is with him, right?" she asks.

If you are ever in need of medical care, come on here to Duke. As terrifying as this is, we have felt so good about the care Heath is receiving, every step of the way. Doctors, nurses, specialists, nurse practitioners, respiratory therapists, and everyone one else. We are so grateful. Scared, but grateful."


May we continue to wait during this Advent with hope!- Blessings, "Gran" Sarah