Lately, Joshua's symptoms have improved so this whole process of pre-transplant is a little hard to swallow since he's doing seemingly well. Today our doctor told us how very fortunate we are that Josh is doing so well on the outside. We've heard that often. She said with a little laugh, "Ya know, this is not typically what high Fontan pressure looks like."
After talking with her and telling her it felt a little strange going through all of the transplant prep when he is thriving, she explained in great detail the ramifications of his test results. She referred to it as the the "silent threat" that lies within his little body and explained what it could potentially mean long-term, not only for his heart, but also for his lungs. None of this was new but it was good to be reminded again that there are some serious issues...I so easily forget. I think forgetting is how I cope.
This whole transplant process is so much more complex than anyone could imagine (unless you've lived it). It's not cut and dry, there are no clear answers. It leaves us as parents with a terribly difficult decision to make, a life-or-death decision really. The stakes are so high that I'd much rather run and hide than make a decision that could have a devastating outcome. But that's what we have to do.
Anyhow, besides having a good long talk with our cardiologist, there have been no significant changes with Josh's heart. It's holding steady. While I'd welcome a miracle right about now, I'm incredibly grateful that we didn't walk away with any worse news.
So now Josh has officially done all of the necessary preparatory tests, we'll go to Stanford next week and get the transplant ball rolling. Hopefully we'll walk away feeling like we are doing the right thing & if not, we'll reassess. We can always reassess.
In the mean time, he's feeling good, he's active and he's happy. That's all we want for him, so we're happy too!
(side note, isn't he the most handsome? Liz Perryman Photography took our family photos this week...I'll share more when I get them.)