One thing we have learned unequivocally in Bodie’s heart journey is that when the hospital calls, we go…we drop everything and go…

Bodie’s team at Stanford has been nervously watching his weekly labs taken in San Diego, waiting to see if his platelets would stabilize so that we could move forward with his annual monitoring (which is now almost 3 months overdue). Unfortunately, we seem to have found the one thing in the world more stubborn than our son – his platelets!

His platelets ARE in a better range, but still bouncing around like they’re on the world’s most fun roller coaster. In the last 5 draws, they’ve been 27K, 70K, 23K, 100K and 79K. As a reminder, he needs to consistently be above 50K to even consider doing a cath and biopsy.

Because we’re already 3 months past when we were supposed to do these procedures, Bodie’s team is getting understandably nervous about wanting to see what’s going on inside his heart.

It’s not safe to do a cath and biopsy (which is more or less the gold standard of transplant monitoring). But his team doesn’t want to wait any longer to see what’s going on. So they’ve put together a less invasive monitoring plan, which includes a CT scan, Allosure Heart mapping and bloodwork, along with a multi-disciplinary clinic visit, EKG and echocardiogram.

All of this is designed to get us as comfortable we can safely get under our current circumstances. with Bodie’s heart, with a plan to follow up with a cath once we can safely do so. There are things we WILL NOT be able to do with a CT scan, like getting a good look at his coronary arteries and being able to biopsy his heart tissue.

It’s not perfect.

But it’s what we got.

So Bodie and I are headed up to Palo Alto for a couple of days of testing and appointments.

Please keep Bodie in your prayers:

1. Pray for his heart. Please pray that they see NO signs of rejection with this special heart. Bodie looks SO good from the outside these days – please pray that he looks as good on the inside as he does on the outside.
2. Pray for a clear path ahead. Given Bodie’s platelet situation, we’ve sort of been in limbo, treating the platelets but still not having a clear indicator (1) what is actually causing the issue, (2) what our long term treatment plan will be, and (3) how soon we can do a full cath and biopsy. Please pray we get more clear answers over the next few days.
3. Pray for Bodie’s spirit. He’s been pretty bummed to be back at school and already facing missing classes for medical appointments and procedures. (As a point of clarification, he is NOT sad about missing school – this kid does not like school! – he’s sad about constantly being behind in his schoolwork because of it.) Last year was a VERY hard fought battle for him, and left him discouraged toward school. Please pray for him to focus on the positives and how much better he feels.
4. Pray for smoother sailing. Bodie’s had a bit of a rough go of things in the first year post transplant. We covet smoother days ahead with fewer procedures and appointments, so that he can get to what 15 year old boys love to do – game and hang out with his friends!

Thanks for all of your support and prayers!