A Lil' Boy's Journey to Live….

Riley had an appointment with pulmonary on Thursday. It was just a routine appt. without labs which made Riley Happy!
Dr Kreindler and Dr Goldfarb have been discussing Riley’s case apparently and have decided to move forward with a full body CT scan. We were scheduling a chest CT as part of his annual work up post transplant but with Riley having Epstein-Barr and some possible side effects from that they believe it’s better to do the full scan now rather then just the chest. We were going to attempt just the chest CT without sedation but with the change in scans comes a change in plans. First we know Riley won’t lay all that time so he will require cardiac anesthesia. Second this scan requires a good amount of contrast to be used. The extra contrast raises some concern for Riley’s kidneys .. which were in failure twice after transplant. So because of that concern Riley will most likely stay the night to make sure he is hydrated and the kidneys are handling the extra contrast. Of course they are also consulting with Nephrology.
We should know more tomorrow but they are trying to schedule the CT for next week.
We knew eventually the full scan would be coming but all of a sudden it’s here! It’s a little scary for sure! Now we are going to be doing this right before Riley’s 6th Birthday! The results Have To Be Positive .. As in No PTLD!
Last year Riley didn’t even realize it was his birthday and we swore if we pulled him through last year .. This year we would Celebrate! ♡♥

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