A Lil' Boy's Journey to Live….

Update .. ❤

Update .. We are still working out the details of next week’s procedures. We know Riley will have his Bronch and Cath on Friday. Dr Ryan in GI was working with cardiac anesthesia to see if it was possible to also scope Riley while he’s under. With the new findings of Loeys Dietz Riley needs an MRA (Similar to MRI but checking blood vessels). Riley will also need to be sedated for that. Makes sense to try and do it while he’s already under anesthesia rather than sedating him again in the near future. The discussion now is the length he may need to be under to have three different docs come in and do their thing along with the MRA. We have already expressed that if it comes down to time we would rather do the MRA than the scope. So for now our opinions are being shared with the teams. Monday Riley sees a new geneticist, Dr Kallish and a new cardiologist, Dr Drant. Both are joining Riley’s team because of the Loeys Dietz.
Next week will be a busy week for Riley. Monday is CHOP to meet the new docs. Wednesday we head to Philly for a Covid test. Thursday is pretesting (labs, echo, EKG and stress test). Friday is Riley’s 8 year Transplant Anniversary and his procedures day.
Hope Everyone has a Great weekend! Will update again next week.

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

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