Follow-up and a Pig Valve?

We have had two follow-ups with Dylan's cardiologist since my last post. The first was last summer, and the second was yesterday. 

He did an EKG, which is very routine for him.

I was telling Dylan that doing an EKG when he was a baby was a very different scenario. He HATED getting the 10 sensors placed connected to 10 wires. He would scream and cry, which makes it impossible to get an accurate reading of the heart. So we'd have to snuggle him and rock him until he calmed down long enough for the nurse to get a good reading. It was a process. Then taking all of the sticky stickers off afterward always created yet another traumatic experience. 

And that was the easier experience, compared to getting a baby or a toddler to lay still while half-naked as an ultrasound tech tries to get very specific images of the heart during an ECHO. I used to dread these appointments because I knew what was coming, and I knew how difficult it would be for Dylan. We would both be exhausted by the end of it.

These days? Easy peasy! What a difference it makes to be old enough to understand what's going on!

The results? The heart looks and sounds very similar to the last visit, which is good. The doctor is always looking for any evidence that the leak in the pulmonary valve is getting bigger. It already leaks 50 % of the blood backward as of the last MRI Dylan had in 2019. And now that his body has kicked it into high gear with growing, the likelihood that things start changing with his heart go way up.

We talked about the options. The pulmonary valve is a slower speed valve, compared to some of the others, and so a mechanical valve really is not a good idea. They last longer, but they have the risk of blood clots developing because the blood flow is slower through that area. So he would get a tissue valve, which means it would come from something or someone, like a pig or a person. Dylan likes the idea of getting a pig valve! He also got the hear his own heartbeat for the first time (I got to as well!). It is a large murmur. It sounds like a dishwasher!

SO, his heart is holding steady as of right now. We'll continue to wait and watch. At the next appointment this summer we'll schedule his next MRI so that the doctors can have something to compare to the 2019 one. 

We are grateful for the blessing of Dylan's heart health up to this point in his life. You'd never know that his heart works so much harder than the average person just to pump the blood needed around his body. It's amazing how his heart compensates for so much loss. My prayer has been that when things start changing that we will notice. We want to hold off on surgery for as long as possible, but at the same time, we want to be ready when the time is right and not delay. It's such a balance! But for now, he's going to continue to dance and ride bikes and climb mountains. And we're so grateful.