For the Record – reposted
I’m reposting this because it broke when I posted it the first time and I had comments that the link didn’t work – hope it works this time! Oh, and CHOP called to tell me they approved Liam’s visit, though we can expect about $250 worth of co-payments, I laugh in the face of co-payments. . . I laugh a lot.
Tonight between work and the kids’ appointments after work, I dropped three envelopes relating to Liam’s medical records off at the post office. One package went to Heart Camp! Yay, heart camp! One package when to our local children’s hospital requesting that Liam’s surgical records, etc. be sent to the Children’s Hospital of Philadelphia. The third package went to Philadelphia. It was packed full of cath images, x-rays, an ekg, and holter notes for many, many holters.
Liam’s cardiologist called back last night to say there was no significant change from his last Holter. So, now what? We’re having the docs in Philadelphia look over everything in advance of our trip there this summer. Maybe he’ll get a pacemaker in the City of Brotherly Love, maybe not. Maybe he’ll end up in the cath lab to widen his pulmonary stent or coil more collateral growth. Maybe he’ll just do the tour de’ specialists and we’ll be done. It’s all TBD, so we are waiting on records to determine what interventions may come up on our trip, and planning airfares accordingly.
The funny thing was, when I went through this enormous pile of records, I read the dates on the top of each image of Liam’s heart, with catheters run literally inside and outside of it, and remembered Jim and I sitting, waiting, wondering what we would be told. I had images for all six of his caths. He only ever had one where metal wasn’t added to his body, the first one. To put them in order you can see Liam’s chest cavity slowly fill with precious metal each time he went into the cath lab. Then, suddenly on the last two, the sternal wires are gone – missing after a surgery to remove them. It’s really weird that Liam’s had five open chest surgeries and no wires, but they’re in a medical specimen jar in my dresser with bits of Liam still clinging to them. I’ve kept some strange souvenirs on this journey.
I think I’m getting better because as I looked at all these pictures, there were really at least thirty of them, I felt something inside of me. For so long I could handle these medical artifacts of the intrusions on my son’s heart without feeling intruded upon in my own heart. Those walls I put up to get through the worst of it have crumbled, and I felt it. I felt the memories of helplessness and hanging on by hope. I felt it and I accepted it, and I put it in a flat rate envelope to release it.
Anyway, my favorite picture in the bunch was an x-ray of Liam’s spine and legs. I sent it because I know Liam has a syndrome with all of these birth defects and I want to know more about it. I don’t want the specialists to leave out the orthopedic part of the equation. I did ask for the pictures back after they made copies, not for me, but for Liam. These records and pictures are literally and figuratively the collective body of knowledge for his body. It’s our learning guide for the next eight years as he first begins and finally takes full ownership of his medical care.
The reason the ortho x-rays were my favorite was because they were taken when Liam was three and a half years old. He’d barely survived the spring, and that fall was the end of six months of potty training pain. Liam’s body had been so invaded, by surgeons, machines, far too many tubes, and infections, that his will to not poop in a toilet was iron clad. But, that day at the old children’s hospital waiting four hours for our appointment because the ortho surgeon was on call in the ER for a trauma patient, Liam finally had to break down and poop in a toilet because he couldn’t sneak away and do it in his pants.
Yes, my favorite picture of the insides of my child is the one that marks the day that he finally let go of a little control and took a big step forward away from fear. We left that appointment having his legs and feet cast for braces, but we were walking in the right direction. Now the pictures are with the US Postal Service heading East. We will follow where this path will lead us, we will keep walking, but today, the pictures reminded me of how far we’ve come and how much we’ve healed.
Thanks for reposting, Amanda, I was glad to be able to read the entire post. I think it’s a good idea to get someone entirely new into this process with perhaps those who will have new perspectives and a new approach. We’ll all be back here waiting with bated breath to hear what’s going on. What is the Holter showing? Is there still a problem with Liam’s sinus? Oh – will Liam be hosting a birthday party this year for everyone or just his friends? I know there comes a point where their peers are very, super important; much more so than the “old folks.” Love, Grandma A. What is CHOP?
CHOP is Children’s Hospital of Philadelphia. Liam’s sinus rhythm is permanently damaged – he has sick sinus syndrome, but his heart is pausing less frequently.