Appt with lung transplant @ChildrensPhila .. 💚

Riley had his appt Monday with lung transplant.
PFT’s (pulmonary function test) and labs were all within ‘Riley range’.
He seems to have recovered nicely from the astrovirus and CDiff. Just has a few more days of Vancomycin to finish.
He lost a few pounds from being inpatient last week but nothing concerning. We actually made some adjustments to his gtube feeds/hydration. Hopefully these changes will get Riley back to eating orally more. With all the gtube nutrition he just isn’t hungry.
Riley did start taking Tamiflu prophylactically last night because unfortunately his big brother Christian was diagnosed with the flu yesterday. Fingers crossed that Riley does not get the flu or back to CHOP he’d go.
Lastly Riley had a dexa scan. Those results will be sent to his bone health doctor in Endocrine who we’ll see before his next bone infusion therapy in the spring.
Thank you All for continuing to be on this Journey with Riley.

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

Riley is Home .. ❤♻️💜

Ok Day @childrensPhila .. 💚

Riley had another ok day. Still having issues tolerating his feeds but that can be expected when you have a GI bug on top of CDiff. So he’s pretty much not eating orally but is managing to take Pedialyte through the gtube instead of needing IV fluids.
Hopefully Thursday is an ever better day and Riley can go home. Won’t know if that’s happening though till sometime Thursday. Reality is Riley can do the gtube hydration at home but being how medically complex he is everyone wants to be sure he doesn’t need the hospital’s support before we make that move. No one wants to have to go back. Well see what Thursday brings.

~ Dr Mike from heart camp came to visit Riley. He helped to lift Riley’s spirits. Good luck to Dr Mike as he soon will be entering into his cardiology fellowship either at CHOP or another children’s hospital somewhere in the US.

Riley’s @ChildrensPhila .. 💚

Riley is currently at CHOP. He was admitted Sunday through the emergency department. He has since been diagnosed with Astrovirus and CDiff.

Thank you for the continued love and support. 💕