A Lil' Boy's Journey to Live….

Riley’s appointments on Monday went well!
Labs, echo and EKG all looked Good. We met Dr Berger, while seeing Dr Rossano, who is joining the heart transplant team. Dr Berger will be a Great addition to the team. Very thorough.
Riley’s PFT’s (pulmonary function tests) were comparable to his last. Which is good. We discussed the results from the swallow study. Riley was quick to tell Dr Josephson that the study didn’t show aspirating, but the reality is during the last study it didn’t really either and a month later his lavage showed lipid laden macrophages. This time we aren’t repeating a bronchosopy so we really need to find the source before giving the go ahead to drink. Hopefully when we see Dr Ryan and Dr Ruiz next week we’ll come up with a plan.
Last appointment was with Dr Anari in orthopedics. Another amazing doctor we’ve added to Riley’s team. He too was very thorough. We spoke of Riley’s cardiac history and his newer diagnosis of Loeys-Dietz. He said it made sense because Riley presents more like someone with LDS than with cardiac history. There was a slight increase to Riley’s curve (scoliosis). He now measures at 21. Intervention occurs if the curve measures over 25. So we will keep an eye and see orthopedics again in 6 months and repeat an xray at that time.
Again overall the appointments went well. Riley will see both transplant teams again in 3 months and orthopedics in 6.
In the mean time Riley has about a week left of 7th grade!! Craziness! In the beginning of the summer Riley will go to Liberty Lake Day Camp for 2 weeks and the last week of July he has been invited back to heart camp with Children’s Hospital of Philadelphia! Riley is Super Excited for both!!

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

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

Tag Cloud

%d bloggers like this: