E had his regular echocardiogram and cardiology appointments yesterday at Hopkins. The echo was very thorough and included new 3D pictures of his heart. We saw Dr. Pardo for the first time. She is in the same group as Dr. Dietz and Libby, whom we have seen in previous appointments.
At our last appointment in October, E’s aorta root measured 3.7 cm. That felt comfortably far enough away to give us a sense of security. You see, in Loeys-Dietz patients 4.0 cm is the magic number. When the root reaches that diameter, it runs the risk of dissecting and therefore it is time to schedule valve-sparing aorta root replacement surgery to prevent that from happening.
Eddie’s aorta is now at 4.0. The magic number. Time to talk surgeons.
It’s so strange to hear that. We’ve been working like crazy to prevent that from happening since he was 2. But the reality is we’ve known we couldn’t stop it…..we were only pushing it back. And now it’s here.
When Dr. Pardo said 4, I actually gasped a bit. Nothing overly dramatic, but just was surprised because each appointment I always thought….not this one, not this one, not this one. The pleasant reality, though, is hearing that magic number isn’t all that earth shattering. They didn’t rush him right off to meet a surgeon or get whisked away at that moment for surgery. E didn’t break down in to a thousand crying, hysterical pieces. There was no outcry for a second opinion or denial that this could be happening. There was just a shock but slowly an acceptance of the time has come…..of course, it doesn’t have to come today.
In fact, we have many decisions to make. The first is timing. The idea of E missing six weeks of school or more is daunting. He’s a high school student that wants to go to college so grades are important. After surgery, I want him to just focus on healing and at that point (even though I’m a teacher) I won’t give a rat’s ass about his grades or making up work. I’ll just want him healthy. Additionally, his dad and I are both teachers. Logistically, it makes a lot of sense to do the surgery in the summer. Dr. Pardo said since he has just reached that magic number, we could wait but the surgery must be done within a year. So if not this summer….next summer.
However, waiting brings its own risks. Including a life threatening dissection. But probably not….but there’s a chance. Could we deal with the anxiety of having that loom over us for a year?
And then there’s the choice of location. He could come here to Hopkins. The surgeon here has probably done more of these surgeries on pediatric LDS patients than anyone else in the world just because he’s at Hopkins. And then E’s other docs are nearby. But it’s six hours from home. And we would need to plan on being here around three weeks to a month.
Or we could have it done at Duke which is really emerging as a knowledgable and experienced facility for LDS patients in the South….and it’s less than 2 hours from home. But E has never been seen there and isn’t as comfortable because of that. But he could go home after hospitalization and travel back and forth for post op visits. Plus, he’s more likely to have friends and family visit…including his little brother.
A little overwhelmed now that we’re here, but today we’re okay. Heading home this afternoon and getting back into normal life of school and work tomorrow. I’ll update as we continue down this journey.