A Lil' Boy's Journey to Live….

Riley’s visit with heart transplant went well! Labs, echo and EKG all looked good.
Riley’s weight is still down but we’ll discuss that with lung transplant since their nutritionist is who we work with for nutrition.
We also discussed possibly combining Riley’s transplant appts, heart and lung, into a one day visit. Currently we rotate seeing each team every 6 weeks. If we change the visits it would be seeing both teams on the same day every 3 months. That is honestly the way it is suppose to be but after Riley’s rough road after transplant we requested to see a team every 6 weeks. We didn’t want to go 3 months without someone having an eye on Riley. For us it was all about beating the odds and not wanting to miss something if he wasn’t seen. Here we are though 8 years later and Riley is beating the odds! So .. in the spring we will reevaluate going to 3 months. In the spring will be Riley’s 9 year transplant anniversary. AMAZING!! Let’s get good results from his yearly cath and bronchosopy and go from there. Also in the spring cardiology should be moving to the same building as pulmonary. That would certainly make seeing both teams and doing all the testing involved with seeing each team a little easier.
Next week we head back to CHOP to see dermatology. Riley has clusters of warts on a knee and elbow. With Riley being immune compromised we don’t want to try and treat the warts ourselves without guidance from a doctor so his team suggested a visit to dermatology. This will be the 11th specialists Riley sees.

#CHD #Heterotaxy #LoeysDietz #Transplant #Warrior #BeatingtheOdds Everyday. β€β™»οΈπŸ’œ

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