Exercise Test Follow-up and Exam

We went in yesterday for another cardiology appt, this time with Dr. Krabill. She's been caring for Dylan and his heart since he was about 22 weeks along before he was born. We appreciate her calm, sweet presence in his life (and ours as well!). 

We did the EKG and ECHO while we were there. Everything is a bit strange with COVID and the restrictions in place right now. No movies for Dylan to watch during his Echocardiogram (like an ultrasound for his heart). So this is the first time he got to sit and watch the ECHO as it was happening, measuring all of the tiny areas of his heart, measuring blood flow velocity, and all the rest. It's pretty remarkable what we can see with technology!

Finally we met with the doctor to review all of the results. Thankfully, things haven't changed much from the last time we met with her (October 2019). The big number on his EKG that we keep looking for was 140 last time, and it's increased to 147. Once it hits 160 we'll be looking into surgery options. And there is a new little leak happening in his aortic valve. 

The valve that has concerned us from the beginning is his pulmonary valve. And it's still leaking 50% of the blood backwards every time it pumps, which is crazy to imagine. Somehow Dylan's heart and body have learned to compensate. Dylan's heart continues to be a wonder! It's amazing. You wouldn't know that he loses 50% of his blood volume that's supposed to be going to the lungs to get oxygen by looking at him. He's got energy for days, runs, plays, dances, keeps up with other kids. He's never turned blue, fainted, broken into a cold sweat, had a severe loss of energy, or anything else that would indicate that his heart works much harder than yours or mine.

But even with all of this, we're keeping a closer watch on things. His annual visits have turned into 6 month visits. And we're doing more tests now. Next up: I'll be heading back in next week to pick up a holter monitor. This is a device that Dylan will wear for a 24 hour period to track his heart rate constantly. They're looking for anything irregular with how his heart beats. So that will be a first for us! We'll update with that experience soon.

As we drove home from the clinic with our Slurpees in hand (Dylan's treat of choice yesterday), I asked him how we feels about having a heart that doesn't work the same as other people's.

"Sometimes I feel sad. But most of the time I feel proud of my heart!" 

That made me melt. 

Dylan just turned eleven. ELEVEN!! For so many years these visits have been about getting through it, trying to help him not feel afraid of the machines and all of the tests (he would scream and cry through these visits when he was little). It was all about managing his fear response and getting helpful information for us as parents. But now that he's all grown up, it's all about educating him, including him in the conversation, and working through feelings together. He's so big. And he's gaining wisdom beyond his years through this "defect." But sometimes defects can turn out to be our greatest blessings.....because they help us grow into the people that God knows we can be. ❤️