A Lil' Boy's Journey to Live….

Archive for September, 2020

Heart transplant appt @childrensPhila .. ❤

Riley’s heart transplant appt went well. For over 7 years Riley’s Angel heart has been Beautiful! Today was no different. EKG, Echo and labs all looked Good!
In a few weeks we’ll return to see Urology and soon after that Nephrology and then back to bone health to plan for the next round of bone infusion therapy. Until then ..
Thank You All for being on this Journey with Riley.

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

Riley’s follow up Urology appt @childrensPhila 💚

Update .. overall Riley’s urology appt went well. We did learn from the ultrasound though that Riley has cysts on his kidneys. The concern being there a several on both kidneys. As long as it’s not polycystic kidney disease .. it shouldn’t be too much to worry about. Next stop is nephrology. Well update when we know more.

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

Appts with GI and Urology @childrensPhila 💚

Update .. Riley’s appts with GI and Urology went well.
For GI they have added a PRN of Zofran for when Riley feels nausea. Mainly because he’ll throw up to make himself feel better and that could damage/ undo his Thal. Also increased his acid refux med. GI is talking with the nutritionist in lung transplant in regards to trying some different things in the gtube versus the feed he’s been getting for most of his life. There is also talk of doing another scope but the hope would be to loop that into something else he’d need anesthesia for. Right now, thankfully, Riley doesn’t have any procedures scheduled so we’re going to hold off for a little while. We will follow up with GI in November.
As far as urology it may fall under the little more private category since Riley is now 12.  I will say that it shouldn’t be anything of great concern. Riley will have an pelvic/abdominal ultrasound on Monday in urology before his appt with plastic surgery. Tuesday we will have a follow up appt with urology to review the ultrasound and a couple another things that are being done between now and then.
Hopefully the issues we went to see both specialities for can be resolved as we try to give Riley a normal as a life as possible .. even in these Crazy Covid19 times.

#CHD #Heterotaxy #Transplant #Warrior #BeatingtheOdds Everyday. 

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