Is there a specialist in the house?

Man, has this kid been put through the ringer in the past 48 hours.

Because CMV can affect so many organs, Bodie has been evaluated by Infectious Diseases, Infection Protocol, Gastroenterology, ENT and Ophthalmology, along with Hematology and, of course, Cardiology.

Through it all he’s been a trooper, even when the Ophthalmologist had to dilate his eyes and look at the back of his retinas – and the GI guys had to discuss his fecal matter in detail with him. (When they were here, they asked Bodie to look up the Bristol Stool Chart on his phone. Bodie replied that he would not because he did not want that in HIS search history! Don’t search for it on your device – unless you really happen to be fascinated with fecal matter. Just saying.)

He’s also had roughly his body weight drawn in labs and cultures. This morning, in true hospital phlebotomist style, the IV nurse rolled in early morning and turned on every single light in a 10 mile radius. I was starting to admonish her and ask her to turn them down please – until I looked over at what she was preparing.

And then I told her she could use every single light in the greater Bay Area if she needed for that draw.

Bodie, ever the trooper he is, barely woke up for the blood draw and went right back to sleep afterwards.

The big picture of where we’re at with Bodie is that (1) He has CMV and (2) He is severely neutropenic. The problem with that is the treatment for CMV can cause further neutropenia.

In rounds this morning, the attending asked the team why it was a problem to have both CMV and be neutropenic. I was quiet during the crickets that ensued until my ADHD got the better of me and I raised my hand and said “Oh, Oh, I know this one! Can I answer?!?” Everyone laughed and the attending remarked something about me having a PhD (for the record, it’s just a JD – but if you know JD’s, we’re very good at sounding a lot smarter than we are – they make sure to teach that in law school!). The team did figure it out without my help – but it was fun to live out my Grey’s Anatomy med student dream for a moment.

But I digress. Given the above, the team has 3 real objectives right now:

1. Treat the CMV. Bodie is currently receiving an IV medication. Once his viral load starts to decrease, we can then switch him to oral. Once they are satisfied his viral load is continuing to decrease on the oral medication, he should be ok to be discharged. But we have no idea how long that will take.
2. Ensure nothing other than CMV is going on. Hence the 9,999 vials of blood they took this morning. There are a lot of viruses that can look like CMV. We’re all pretty sure it’s just CMV, but they want to make sure there isn’t something else in addition to CMV that we need to be aware of and treating.
3. Bring Bodie’s white blood cell and neutrophil counts up. Both continue to be dangerously low, which means that, were he to get a fever, he could become septic within hours. He was evaluated by Hematology this afternoon, and the general feeling seems to be that the low WBC and neutrophils are caused by his immune suppression meds rather than an underlying condition. So they made adjustments to his immunosuppressants today (we switched out his Myfortic (Cellcept) for Everolimus (which will hopefully help him fight off the CMV more effectively, and should not have the GI side effects he has struggled with since transplant from the Cellcept), and went down on his Tacrolimus). Hopefully these two moves combined will get him to the sweet spot of providing adequate rejection protection while still allowing his body to fight off the CMV.

We don’t know how long it will take to accomplish these 3 tasks, and we covet your prayers that they are accomplished sooner than anticipated!

In the meantime, Bodie is doing well all things considered. Yesterday afternoon was rough, with a headache and multiple bouts of vomiting. But after a healthy dose of Zofran and a nap, he seemed to be past that. Since then, his spirits have been up and he’s been eating like crazy, which is great news!

Amidst the angst of hospital life, we were so blessed to receive a sweet basket from a fellow heart family here on the floor, whose son Camilo was a CHLA kiddo with Bodie and has now been waiting at Stanford for some time for his perfect heart. They gave us the sweetest basket to occupy our time:

We were shocked that, in the midst of their own long hospital stay, they thought to send us something! I mean, I already knew Sonia (Camilo’s mom) was amazing, but this was above and beyond and made us feel so very loved!

And Ramsey, one of Bodie’s best friend’s fathers, who works in San Francisco, came over tonight, brought us pizza and hung out with us for awhile. We are so grateful he takes time out of his busy schedule – and it absolutely made our day! Ramsey visited us often when Bodie was inpatient over the summer. We were talking tonight about how much Bodie had grown since transplant, and I think these pictures really show that – the picture on the left was the night before he was put on Ecmo back in June. The picture on the right is from tonight. It’s like his new heart gave his body permission to GROW!

And my dear friend Amanda reached out to me, out of the blue and asked if we needed some financial assistance right now. It was completely unexpected, and so very, very much appreciated! Given that this admission caught us off guard, finances are definitely tight right now, so it was such an answer to prayer to have her do that!

We likely won’t know more about concrete steps forward and how long the admission will be until we get further into next week and all of the labs and cultures come back. In the meantime, please keep praying for Bodie to remain strong and resilient! And for wisdom for his medical team. As one of the doctors said this morning “With transplant patients, you’re always trying to balance the risk of rejection vs infection. Right now, infection is winning. We need to swing the pendulum back the other way – but not so far that rejection ends up winning.”

So pray we find that sweet spot.