Change and an Old Friend

Dylan and I visited his cardiologist a couple of weeks ago. He's on the visit-every-six-months schedule right now. We started with an Echocardiogram, to take a look at his heart via ultrasound. Then we went next door for an EKG and regular checkup. 

Unfortunately, the EKG did not work properly, so we didn't get any helpful information there. But the Echo provided enough to give the doctor a bit of concern. 

Turns out that Dylan's heart....while still doing pretty great....is starting to show signs of dilation. To give a quick re-cap.....Dylan's open heart surgery at 5 months of age repaired most of the defects that he was born with. But in repairing the pulmonary artery, the surgeon had to cut through the valve. Ever since, Dylan's pulmonary valve has "leaked," or allowed blood to go backwards into the right side of his heart. Four years ago, he had an MRI done to get much more detailed information about how bad the leak was. The MRI showed that he lost 50% of the blood back then. Amazingly, his heart was a rockstar (which is quite an understatement!) because it adapted, and you couldn't tell at all that his heart pumped differently than another person's. When doctors expected to see signs of his heart weakening (getting tired easily, not being able to keep up with other kids, turning blue, having cold sweats, etc.), they couldn't find any evidence. 

Since then, Dylan has been active and normal, doing competitive ballroom dance, racing his bike, running, and even doing challenging hikes (Mailbox Peak, and Granite Mountain, just to name a couple). Even now, we don't see any evidence on the outside that things are changing. But the Echo says differently. 

So, it's time for a new MRI. This will give us a new look that can be compared to the MRI from four years ago. Hopefully, we'll get that done in the next couple of months. At that point, it will be time to discuss next steps.....including valve replacement surgery. 

As a sweet bonus.....we were at back-to-school day this last week, and we happened to run into one of the nurses who took really amazing care of him after his open heart surgery as an infant. She was amazed at how great he was doing. I know she loves what she does, working in the Cardiac ICU at Seattle Children's, but there are hard days. She kept saying how encouraging it was for her to see him, 13 years later, healthy and strong. 

God bless the amazing people who have helped to care for my boy and his special heart, even before he was born.