Yesterday we talked with the surgeon again, and also met with one of the transplant doctors and a few members of the transplant team. By the end of those conversations, everyone was in agreement: transplant is the best path forward for Isaac.
The surgical repair is still technically possible, but the team walked us through what it would actually mean. To fix the tricuspid valve, they’d have to cut deeper into his heart than they ever have before. And if that surgery doesn’t go the way they need it to, there’s no good fallback. He’d go on ECMO and wait for a donor heart, and there’s a very real chance a heart wouldn’t become available in time. The surgeon put it plainly: going into that repair would be putting all our eggs in one basket. He said he wouldn’t be able to sleep at night doing it.
So we’re moving forward with the transplant evaluation. The team already believes Isaac is a strong candidate. It’s a process, there are steps and assessments involved, but we could realistically be on the transplant list as soon as next week.
From there, the big question is whether we wait as inpatients here at the hospital, where a heart could possibly come in the next six weeks to a few months, or whether Isaac is stable enough to go home and wait as an outpatient, which could mean somewhere between six months and a year or more. That’s still being figured out.
In the meantime, they want to try something next week, likely Wednesday. The tricuspid valve is leaking so severely back into the upper chamber that blood isn’t flowing the way it should through the baffles, and there are some leaks and obstructions in there too. The plan is to balloon and stent the main baffle to try to improve blood flow and take some pressure off the leaking valve and ventricle. It won’t fix anything permanently, but it may buy more time.
On a much happier note, everyone keeps remarking on how great Isaac looks. He’s been up playing board games and just hanging out with us on the couch most of the day. We’ve talked with him a little about the bright side of all this. He loves the idea that one day he might not need a pacemaker and could finally jump on a trampoline. He’s been retelling all of it to his sister, the whole plan, in his own words. He’s the sweetest kid.