I’m about to age myself here, but one of my favorite songs in college was “I will not take these things for granted” by Toad the Wet Sprocket. If you’ve never heard it, do yourself a favor and go check it out. I think it technically was about the songwriter missing his wife or family on the road, and talked about how he wouldn’t even take the small things for granted (music in the bedroom, laughter in the home) while he was on the road. But for me, it was such a powerful reminder of how many precious moments have been made possible for Bodie since his transplant. The refrain of the song kept running through my mind this past week as people hustled past us while Bodie, Dusk and I walked across the Golden Gate Bridge.
Dusk, Bodie and I spent this past week up in Palo Alto, getting all of Bodie’s semi-annual cardiac appointments out of the way. It was a VERY full few days:
On Tuesday, he met with the multidisciplinary transplant team, seeing the Cardiologist and Transplant Psychiatrist, along with consulting with Nutrition and getting an EKG, an Echo and lab work done.
On Wednesday, he had his semi-annual right heart catheterization and biopsy, followed by a spinal x-ray to check the healing on the fractures discovered last December.
On Thursday, we met with a Neurologist to discuss Bodie’s frequent headaches and possible treatment options.
We learned a lot of new information over the past few days, but I’ll try to summarize it all here.
CARDIAC: Things are GOOD!
Bodie’s bloodwork all looked wonderful (thanks to his platelet medication, his platelets were in a good range to be able to cath him safely!). His echo and ekg were both perfect, with function and rythym both looking fantastic. He has grown A LOT, which we knew – but it was still great to see! He is now 5’11.5″ and 140lbs! (So close to 6ft!), which means that, since transplant, he has jumped from the 45%tile to the 84%tile in height, and from the 20%tile to the 56%ile in weight! It is amazing what a healthy heart can do!
His heart pressures were up a bit since his last cath, which had me pretty worried from the time the PA told me they were “slightly elevated, but we need to wait for the final report” at 11am, to when the cardiologist called me back at 5pm to let me know everything looked fine. So yes, they’re higher than last time, but they were really low last time, and are still well within what is considered normal, so his team isn’t at all worried. (If you’re not a seasoned heart transplant parent, if you have higher than expected right heart pressures, that can sometimes be an indicator that you have rejection to the donor heart that is causing back pressure in that right ventricle.)
We had to wait another almost 24 hours before we got the results back from the biopsy, and learned that he had a score of zero! That means NO sign of rejection. Praise God!
NEUROLOGY: We have treatment options!
We were referred to Neurology because Bodie has frequent headaches (usually 2 days or so per week, often requiring him to be picked up early from school). The only thing he is allowed to use to treat them is Tylenol (and as far as Bodie is concerned, he might as well just take sugar pills and they’d be as effective as the Tylenol ha). The Neurologist did a full neuro exam on Bodie and diagnosed his frequent headaches as migraines, likely due to stress or some other external cause (rather than an internal issue with his brain or optical pressures). She had several suggestions, including a new medication and a device he can put on his arm to provide impulses to his brain to stop the pain feedback loop mid-migraine. She also referred Bodie to both the pain clinic and OT, to get some useful exercises he can do on his own to stop the pain feedback loop as well. Bodie was really excited to hear he might actually have some solutions that will work now!
SPINE: meh
As part of the usual transplant surveillance protocol, LPCH does annual spine x-rays as they know the heart failure preceding transplant and the transplant medications can compromise bone health. Bodie’s spine x-ray in December 2024 looked fine, with no fractures. His December 2025 x-ray by comparison showed 2 new fractures in his lower spine. At the time we were referred to Endocrinology to discuss the results and treatment options. Since he had just fallen off a ladder in early December and it was impossible to know how old the fractures were, Endocrine wanted to just watch and see with a repeat x-ray in June. This week’s x-ray showed no new fractures, but the fractures seen in December haven’t really healed. So we’ll be consulting with Enodocrinology again to see if they want to do any interventions.
Now, back to what I mentioned in the beginning about not taking things for granted. Whenever we have medical trips and Bodie is feeling well enough, we try to fit in fun stuff. This time, we really hit it out of the park.
When his appointments were done on Tuesday, we headed up into the City to walk the Golden Gate Bridge. We only had time to walk halfway across, so promised Bodie we would come back on Wednesday after his cath to walk the entire thing. But we had a great time walking halfway across. Walking the Golden Gate Bridge is especially meaningful to us as Bodie would never have been able to do it pretransplant. It’s incredible how much his endurance has improved!
The reason we didn’t have time to walk the entire bridge is that we had already booked an evening Alcatraz Tour. Bodie has always wanted to go to Alcatraz, and we had tickets purchased in June 2024. When he went into heart failure and we had to cancel our tickets, they kindly refunded us. So it meant so much to us to get to finally go.
And let me tell you, this kid had the TIME OF HIS LIFE. He told me he hadn’t had that much fun since we toured the Queen Mary, and he was asking when we were coming back before we had even left!
On Wednesday after his cath (after the nurse had told us he was supposed to rest for the remainder of the day, but he was having none of it), we went to lunch and Menchie’s (his favorite), and then back up to walk the entire Golden Gate Bridge.
After walking across the Golden Gate Bridge and back, we celebrated at CPK. Can I just appreciate Bodie’s appetite for a second? Kid cleared out 2 adult sized pastas, not to mention the bread beforehand, and then insisted on a Wendy’s Frosty on the way home!
Atfer his Neurology appointment yesterday, the three of us went to the Winchester Mystery House and had a blast. (Bodie and I had been before, but Dusk had never been and Bodie was really excited to share it with him, especially since they had a new tour of the attic and basement!).
So it was a very busy few days, and left us all pretty exhausted but SO INCREDIBLY GRATEFUL! We are so grateful for all of you who have continued to check in on us and pray for Bodie and his special heart. We know that has made all the difference in his recovery.
Bodie is done with school for the year (after an exceptionally difficult year for him academically) and his heart looks great. So this kid is officially ready to enjoy his summer, work on getting that driver’s permit and get that extra inch in to hit 6 feet!