Wednesday, October 28, 2009

It's different in black and white

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.


  1. Before I quit my job recently I was a legal secretary and had to make up medical records binders for our clients. After we had Carla I started having little anxiety attacks everytime I worked on medical records. And those weren't even her records! I'm sure seeing them in black and white is not any easy thing, but I commend you for going there.

    You are right. We don't want any of these things for our babies. But, it is our kids' journey and only God knows what they are here to learn, teach and accomplish.

    I know that it has brought our family closer to God. I also know that my best friend picked up the Bible for the first time in her life after we found out about Carla's condition. I also know that Carla's cardiologist told us that there was NO MEDICAL REASON that Carla's heart function should have improved the way it did between the Glenn and the Fontan. So, He has given us trials but He is also providing miracles.

    The Fontan is difficult, but Luke will be SO MUCH BETTER afterwards. It will be worth it.

    Jen Wright

  2. Jesse,
    A small thing, but worth noting, and fun. Web was never, ever embarrassed about his scar. Instead, it gave him status with the other kids - an attitude of "that's so cool" and "you are so tough" (even though he has no memories of receiving it). Little things, but maybe it allows for a little lessening of anxiety? As always, a beautiful and thoughtful post.

  3. not just an active kid, he's extremely active. that's great!

  4. The way you feel about Luke's medical records is kind of the same way I feel about Elijah's scar. Sometimes I look at it and I cry. My own heart hurts from what he has had to endure and will continue to endure. Other times, I look at it and it reminds me how close God has been to us!

    Thanks for sharing your heart with us! And I love what was written about Luke: "extremely active" Praise God for that!! :)

  5. From someone who has not gone through anything and can't relate at all, but who's met Luke and been inspired by you guys as I've read this blog, and know another family who was told that the baby they were still months away from delivering would die within days of being born and that they should think long and hard about even trying for a second child (and is now 3 and while he has special needs, is always smiling in the photos with his little brother - and reading of the little brother who gets extremely upset when he sees his brother upset by things like haircuts) - I have to agree - God is good, and thank God that he chose such wonderful parents for these children and that we're in a part of the world where we have access to such amazing health care.

  6. How did I miss this post? Anyway, I'm commenting late...did you spend all day/afternoon going through it? I know that when Maddie's came, I was so intrigued with reading every report, every word, every number. I was searching for something in that huge packet that wasn't "oops, mistake....her heart is perfect!"

    But only HE can provide us with that sort of comfort. I relearn this each and every day, especially when I'm having "one of those days" of accepting this journey He has graciously given us to endure. God has given us miracles Jessy and I'm so blessed to have a friend like you to share it with. Thanks for sharing your thoughts...I have the same :) Hugs to you and I lOVE Luke in his tiger costume. So cute!!!