A great start to 2024!

Levi had a routine transplant team check up yesterday and all is well! 🎉🎉🎉 He took it all like a champ despite having to do labs twice… but his labs look good and his heart looks great! Hematology ruled out that nothing is “wrong” with his body- just his immunosuppressions are making his hemoglobin on the lower side but today he seems to be at a better level. His “heart failure” number was much lower than past visits but we have figured out that this number can really fluctuate but it’s still good that it was low today.

Levi will be the topic of discussion next week with the team to consult on whether we should switch his immunosuppression medication back to the one he was on right after transplant. This was the one that started the PRES that resulted in his seizure episode. One med he is on now has some unpleasant physical side effects (excessive hair growth and overgrown gums) and is hard to keep at a steady dose so there would be pros to making the switch but we’re just nervous that it might cause him to develop PRES again… they will decide how to safely transition him back on it if they decide that is the best option for him. This switch would also determine when our next biopsy would be. If we switch rejection meds then he will need a biopsy shortly after to make sure the med is working and not in rejection. If we decide to not switch meds and labs look reassuring throughout the year we might not need a biopsy until his 2 year anniversary. We trust that our team will make the best decision for Levi.

I think everything that we have been monitoring has cleared his system now so it sounds like we won’t need weekly/biweekly labs or follow ups anytime soon! It’s been since April that we have been doing that schedule… hopefully it can stay like that for awhile and we won’t need to return for another 3 months! 🙏🤞🏻

Thank you for your continued support and prayers for our strong warrior! 💚💙