Visit with Lung Transplant @ChildrensPhila 💚

Riley’s appt with lung transplant went ok. PFT’s looked good. Unfortunately Riley is down 3 more pounds. Putting weight on has been a struggle but to have lost 3 pounds since July is concerning. Reason being Riley’s EBV counts have also been high. If the EBV results come back high again today pulmonary is going to order a full body scan to check for PTLD. Just the thought is terrifying! Please cross everything you’ve got that Riley’s EBV miraculously went down and that if it didn’t the scan doesn’t show any signs of PTLD. Will update when know results.

#TransplantisNotaCure 💚

Riley and Dr Goldfarb ..

Riley ready for his PFT’s.