March 29, 2015
Josh has had 4 surgeries, 3 pulmonary valves, 2 of which rejected within a year to 18 moths. This time around the pulmonary valve is holding but 18 months in and his tricuspid is as mentioned almost completely rejected. The big question and quite frankly the one that no one seems to be able to answer is why this keeps happening.
So back to the ECHO. Basically I left it with the doctor to investigate with the cath surgeon about our possible options (if any). The pulmonary valve is often replaced via cath. but the tricuspid is in a more difficult location and isn't often needing to be replaced in children. (In fact when I try to google this I come up empty).
Yesterday I had a phone call from our cardiologist. She has spoken with the cath surgeon and he believes it could be feasible to try. This is good news as we don't need to open his chest, and it's scary news because its still an invasive procedure (albeit less invasive than stopping his heart and putting him on bypass).
On April 6th our cardiologist and a team of surgeons will meet to discuss Josh's case, to make sure they all agree with this possible next step. We would really appreciate your prayers surrounding this meeting, most important would be the best possible outcome for Josh. We really would like to have this behind us for longer than 18months... I don't think we've ever made a full 2 years between interventions and replacements and it's wearing and scary. If only we could figure out why he can't keep his valves... ?
That's it. That's our latest update. The doctor kindly refers to Josh as 'unusual'... I am tempted to call him something else... anyway you look at it the kid is a rare bird in many ways and I love that about him as much as it drives me insane in moments like this.
Answers would be nice...