As you can see, we made it home safely from UCLA Thursday and Rudy was all smiles during his last day of school and special graduation celebration on Friday. Life is surreal…one day we’re having discussions about Rudy’s inevitable heart failure, potential transplants, the availability of hearts Rudy’s size & some pretty sobering statistics in general and the next day he’s enjoying a special day at school with his classmates celebrating graduation…fabulously ordinary events in the life of a typical preschooler.
It’s hard to describe Thursday’s consultation. It was a good day…we had the opportunity to ask a number of questions and we got some helpful information but it was heavy and I ended the day drained and a bit heartbroken. There is no simple synopsis but I’ll try to keep this concise. Essentially, a heart transplant could very well be an option for Rudy but the process to determine his eligibility is long and consuming. It would require us to go to the heart clinic at UCLA every 3 months initially for tests, evaluations and monitoring. It would require a consensus among his specialists and their commitment to focus their care with a potential heart transplant in mind. It’s a process that will likely take years and at no time is there a guarantee of a heart. If just one of the many critical variables considered doesn’t align just right, Rudy would be off the list.
I was surprised to find out that the average life span of a successful heart transplant is 10-15 years. I suppose if Rudy were in the final stages of heart failure, I’d feel a bit different about it but right now, 10-15 years seems tragically short. A second transplant could be considered but with each surgery and with each heart transplant, the donor pool gets smaller and smaller due to the increase of antigens. The emerging technology of mechanical hearts could eliminate the need to transplant human hearts all together and could be available to pediatric patients like Rudy in just a few short years…could, could, could. There seems to be alot that could happen!
Right now it feels like a huge and complicated gamble where success is measured by a few years and not decades…a deeply emotional investment with lots of risks and no guarantees at any time!! Sad sigh. I’m grateful for the opportunity to pursue it but there isn’t a big sense of relief in considering it if that makes any sense at all. Luckily Rudy is currently thriving and strong and is no where near the need for the transplant but the larger picture is weighing heavy on my heart and I don’t know where to begin processing the big binder of information we were given yesterday. I’m convinced this isn’t the week to begin…there is much to do in the next 6 days to finish this school year well…and there is much to do in the life of our family this weekend alone so as best I can, I’m going to set aside the big questions I can’t seem to face today and fervently pray for God’s grace and wisdom to face them tomorrow.
Thank you for praying for us on Thursday…Thank you for loving our family so sweetly.