A Lil' Boy's Journey to Live….

Archive for August, 2022

Visit with heart and lung transplant teams @childrensPhila.

Riley’s transplant appointments went well. Labs, echo and EKG looked good. Dr Lin does want to talk to Dr Drant about Riley’s aortic arch and management of the aorta, but says it’s nothing she’s concerned about. There is room to increase the losartan however Riley’s blood pressure was pretty low so that isn’t really an option at this time. We’ll see what their conversation brings.
Over in lung transplant .. Pulmonary function tests looked about the same. There is some decrease to lung function but nothing acute. Pretty much it’s expected this far out from transplant.
Riley is due for his 3rd Covid booster. They would prefer he gets it soon with school starting rather than waiting till the new boosters come out. So we will do that, and then get the new booster along with the flu vaccine in the fall.
Also we have decided to wait to scope Riley. So rather than doing it in October we’ll do it in the spring with his yearly bronch and cath. Unless something prompts it to be done sooner.
Riley’s upcoming appointments are with dermatology, orthodontists and endocrine.

September Riley starts 8th grade! Such a huge milestone for a kid, as we were reminded today, that is so medically complex.

#CHD #Heterotaxy #LoeysDietz #Transplant #Warrior still #BeatingtheOdds Everyday. ❤️♻️💜

14 Year Well Visit.

Riley may not be an Average 14 year old but his Quite an Extraordinary one.

#CHD #Heterotaxy #LoeysDietz #Transplant #Warrior #BeatingtheOdds Everyday. ❤️♻️💜

Summary from Riley’s FEES study. 💙

Heart Camp. ❤️

Some pics of Riley having an Amazing time at heart camp last!! Thank you to Dr O’Connor, Cardiac Center at CHOP and all of the staff who donate their time to give our kids an Unforgettable week making memories. ❤️

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