cardiology check-up

Iris had a cardiology check up on Friday. I took the full day off work and Evan took half a day. I had been preparing Iris for the check-up with a play doctor's kit that we'd been using with Iris's bears at home. So I knew she would do great with the stethoscope. I wasn't sure about how she would do during the echocardiogram, which she hated last time. I had tried to explain what would happen several times to her. 

When we got there, she was extremely calm and let everyone do what they needed to do. She was so calm during the echo that Evan checked to see whether her oxygen was flowing. She was mesmerized by a cartoon playing in the background for most of the time, but occasionally she would say, "all done," or "up." Evan and I would then try to entertain her with something else, like the itsy bitsy spider. 

We did get some bad news. The echo showed that her aortic root is bulging and the valve is leaking a little bit. This is a new development. They can't determine the size of the bulge based on the echo so we have to do a CT scan in the next couple weeks. Because of this finding, the doctors are pretty confident that Iris has a connective tissue disorder, though we know that she doesn't have Marfan syndrome, which she was already tested for. So that means it's probably just a "not otherwise specified" expression. 

The bulge isn't an emergency situation, and next steps will be determined after the CT scan. They recommended that we start her on losartan, a blood pressure medication. We said we wanted to wait a little while to get some more information about it, and I expect that we'll start her on it in the next few weeks. Dr. Landeck thought that it was likely that there would need to be a surgical intervention at some point, just like Dr. Mitchell thought right after the surgery. 

The valve leakage is minor but should it get more severe and require a valve replacement, then it's likely that she would need a mechanical valve, which would require her to be on blood thinners for life. 

In addition to the CT scan they plan to do further genetic testing. They now are sure that insurance will cover further genetic testing, which they weren't sure of previously.

Evan is being appropriately circumspect, while I am crestfallen. None of this is coming as a surprise, really, and it's far too early to know what the implications are. There was a time when I thought that it might be smooth sailing, but that was a misguided hope. Mostly, I am trying to think about the next step, which is trying to get Iris ready for the CT scan, which will require her to have an IV so they can do an angiogram.

These are some photos of her after the check-up.