Troubling cardiology appt. - post began 12/11

I believe I jinxed Ian. So many ask me what we knew before he was born about his conditions. I always state we knew he'd have dilated vessels of the heart but that has been the least of his challenges. And now it rises to the top.

Typically we go to the cardiologist, they do an EKG and an Echo, we chat with the amazing Dr. Jackie and learn status hasn't changed, and we say see you in 6mo to 1 year. But this one was not so simple. Turns out his vessels have gone from mildly dilated to moderately dilated. Why we don't know but there are many factors. One that troubles me is that I took him off his Enalapril in February. We had spoken to Dr. J about doing this at the beginning of last year but at the same time we were weaning him from his lung meds so didn't want to do too much at once. After a year of being off lung meds, I spoke to Dr. J about it again and she suggested we go on something else. Which was frustrating because I thought he'd be done. And then I made the mistake of not getting an echo done right afterwards so we could have a baseline to see how it might have been affecting him. Turns out from our conversation at this appt, she said it was fine to take him off because it lowers the blood pressure, which he doesn't have room to go lower.

Then we started Growth Hormone. Again, should have gotten a baseline MRI & Echo before to have that base. But I didn't. For a few months I was trying to get a hold of the cardiologist and having communication break downs. Not really sure what was happening but when we finally got in to see her, she was amazing with us, as always. But she did have to break the news. That now we have to assess what could be happening and how to manage it. Very sad. It through me so off for the holidays, I couldn't even think straight.

Thoughts buzzing through my mind are: what is causing this change, could it be the lack of Enalapril, the Growth Hormone, another factor, or would it have happened anyway at this point of growth. She needs to do some research on that. And I will as well. Second issue is how do we manage it. Can't do Enalapril because that lowers the BP and his is already low. She said she might do a Beta Blocker on many other children, but not one with Hypoglycemia, because it masks the symptoms of issues that arise where that is concerned. And lastly, just at first thought, and as a last resort, they can go in and reinforce his vessels. Sad.  Scary. Too much for me to think about at the moment.

With the New Year comes a new focus, or I'll say additional focus. Getting down to what to do about our sweet love's heart. The heart of gold that makes so many melt with love for him. And causes this very tough little guy to be one of the happiest boys I've ever known.