Riley had his 3 month check up with heart transplant on Monday. Dr Rossano said heart function looked Great on echo. Most of Riley’s labs looked good. His Tacrolimus level was high so we’ll decrease the dose and check it again next week. Riley’s ANC (neutrophil count) which is one of the components of your white blood cell count that helps you fight infections was low. The WBC itself was not low .. just this component so we will also check another CBC on Monday. If lowering the Tacrolimus doesn’t help to bring up the ANC we will then have to consider lowering the Bactrim and/or Imuran doses. Everything is a balancing act. Hopefully we can just get it all figured out so it doesn’t cause any bigger issues!
Riley is super excited to be changing more meds .. Enalapril and Imuran .. from liquid (gtube) to pills!
On a final note. We ran into Mike from camp and his Mom while visiting transplant. Riley loves being able to go to CHOP now and see other kids that he knows! As his parent seeing him interact especially in the CHOP setting as an 8 year old is really just so Amazing! Riley has been visiting with CHOP cardiology since before he was born! Then for so many years after we would be there but he was sick. On Oxyen. Blue. Always vomiting. Now he’s there. Visiting. Looking. Acting. Being a seemingly normal little boy. We don’t know what tomorrow has in store but we didn’t think we would ever have today. Thank you to Children’s Hospital of Philadelphia and Riley’s Donor for making Everyday possible! Words could never express our Love and Gratitude .. ❤
#CHD #Heterotaxy #Transplant #Warrior #BeatingtheOdds Everyday .. 💚