How many times have I said the words "single ventricle" or "complex congenital heart defect" since Luke was diagnosed over three years ago? These words have become commonplace in our family and pass our lips often.
In our mailbox today was a thick packet from Seattle Children's Hospital Office of Records. I had sent in a request a few weeks ago to receive copies of Luke's medical and surgical records from his two stays at Children's. With how often I talk about or think about Luke's heart defect, it surprised me how much it shook me to see Luke's medical history in black and white. When I dug a little deeper through the layers of emotions, I think the source of my disquiet is simply this: I don't want my son to have a complex congenital heart defect. I didn't want him to have two open heart surgeries and I don't want him to have another one. I don't want his chest to be opened yet again. I don't want him to breathe hard or be limited and I don't want him to feel self-conscious of his scars. I don't want him to have uncomfortable blood draws and I don't want him to be scared of doctors.
But I have to follow those statements with this one: I know that God has been and will continue to be glorified in Luke's heart. And in the end, that's all that matters.
I remember the night before Luke's first surgery at five weeks old. A group of about 10 of us gathered around Luke's hospital crib and prayed. We beseeched God to protect Luke and to guide the surgeon. We prayed for Luke and we prayed for peace.
God was glorified.
The next day, we were paged about an hour into the operation and called down to meet with Dr. Cohen. "There's been a change of plans." What? Now that was a dreadful walk down to meet the surgeon. The news was good. Dr. Cohen didn't feel that at this time Luke needed the Damus-Kaye-Stansel. He felt his aorta was big enough to provide adequate systemic blood flow. "I would like, instead, to place a Pulmonary Artery band. This is a much less complex procedure, with less time on the by-pass machine and a quicker recovery." Roger and I, grasping hands, walked back upstairs to share the news with friends and family. Again, we circled to pray.
God was glorified.
We have been told more than once that witnessing Luke's heart journey has made them more intentional to live grateful lives and to teach their children the same.
God is glorified.
In the practical sense, I am grateful to have Luke's medical record. I think the more we parents know about our children's heart defects, the better. We can ask better questions and make better decisions. In the spiritual sense, I am grateful to have Luke's medical records because they again remind me of how big God is.
You wouldn't expect to get a chuckle reading these records, but I had to laugh at this comment on an echo report dated 8/22/2007 (9 days post-Glenn and DKS):
"Limited exam on extremely active infant." Yep, that's our Luke! He is so much more than his diagnosis, so much more than what was written in his charts in black and white.