Update .. Oncology looked at Riley’s CT and from what they could see they DID NOT see any PTLD! As Awesome as that is they couldn’t see Riley’s gut as they put it so they couldn’t see if PTLD is there. Soo .. Rather then put Riley through something else right now we are going to wait. We have increased his overnight gtube feeds back to 5 nights to try and help with the weight loss and will continue to keep his immune suppression meds decreased. Riley will see heart transplant in about a month and at that time we will check his weight and EBV again. As you maybe can tell this will be an ongoing thing. Forever. Depending on how things go the next step would be to check Riley’s gut which will be through a colonoscopy.
For now .. Riley is living and loving life! Happy to be back at school. We will cross the next bridge when we get there. ❤
#CHD #Heterotaxy #Transplant #Warrior #BeatingtheOdds Everyday .. 💚