A Lil' Boy's Journey to Live….

Archive for December, 2018

Visit with Lung Transplant @ChildrensPhila .. 💚

Riley’s lung transplant appt went well! Labs and PFTs looked good. Still waiting on EBV results but even if the number is high there isn’t anything to do at this time. EBV was high at his last heart transplant appt but until he is symptomatic we’ll just continue to keep an eye on it. Weight is pretty much the same so we’re increasing his g tube feeds by 50mls. Riley is Super excited though that he measured over 4 feet tall for the first time! Yay!
While having the conversation with Dr Goldfarb about seeing orthopedics and endocrine he mentioned Riley being 5 and a half years out from his transplant. He said this is when we start running into longer term effects that transplant and all that comes along with it has on the body. He also then reassured us that they are on top of it. Monitoring the EBV .. His kidney function .. Pulmonary function .. Riley’s seeing Ortho and Bone Health Management for his bone health .. Endocrine for his adrenal insufficiency etc.
Overall it was a Great visit with the reminder of how far Riley has come and though the road ahead may be complicated by the same thing that Saved his Life .. CHOP along with everyone who Loves Riley will continue to fight for him as we all have done from the beginning!


~ Riley also had his Dexa Scan done. Results will take a little time but will update when we have them.

#CHD #Heterotaxy #Transplant #Warrior #BeatingtheOdds Everyday.

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