I could try to write a post about this right now, but instead I will just share an email (or most of it) that I just sent to some family and friends:
Just wanted to send out an email to some of the people in ours and Jack’s life, since I sent out an email last year when his congenital heart defect had caused a further complication. If you recall, in the past (before last year), they had predicted that surgery would come when he was probably 40 – 60 years old. Last year, because of the complication, they said we could still wait a year to come back for a follow up, but they put him on a medication and said that surgery wasn’t soon, but would likely come before adulthood.
We’ve now had our annual check up with the cardiologist and have been told that he was surprised at how much the problem has grown in just a year. He said that if Jack had had some large growth spurt, then it might have been explained by that, but that’s clearly not the case. (He did all kinds of measurements on Jack’s weight/height. Even weighing him a second time with almost all of his clothes off, just to be as accurate as possible.)
The doctor is going to have us go to a children’s hospital (where he is based) for a CT scan of Jack’s heart and possibly an MRI. He said that he doesn’t think that surgery is going to happen immediately, but that “we need to start preparing for surgery.”
We won’t really know anything else until after we get the CT or MRI. Jack took it all amazingly well. (I learned from last year when I reacted a lot more to the news and that made Jack afraid. I was super calm until I cried a little bit in the restaurant bathroom when Eric met us for lunch.)
We’ll keep everyone updated as we learn more. The doctor said there is a possibility that it could be better (or worse) than he thinks it is, which is why he wants more tests. He said there is a super slim chance that given an eye symptom that Jack had this past year, there could be something really bad (that would probably involve us having surgery right after a CT Scan/MRI), but he says he just doesn’t think that’s the case.
If you could say a prayer for Jack and for us, we would appreciate it. We look forward to when we will know more that we can share with you