A Lil' Boy's Journey to Live….

Riley’s lung transplant appt went well! Labs and PFTs looked good. Still waiting on EBV results but even if the number is high there isn’t anything to do at this time. EBV was high at his last heart transplant appt but until he is symptomatic we’ll just continue to keep an eye on it. Weight is pretty much the same so we’re increasing his g tube feeds by 50mls. Riley is Super excited though that he measured over 4 feet tall for the first time! Yay!
While having the conversation with Dr Goldfarb about seeing orthopedics and endocrine he mentioned Riley being 5 and a half years out from his transplant. He said this is when we start running into longer term effects that transplant and all that comes along with it has on the body. He also then reassured us that they are on top of it. Monitoring the EBV .. His kidney function .. Pulmonary function .. Riley’s seeing Ortho and Bone Health Management for his bone health .. Endocrine for his adrenal insufficiency etc.
Overall it was a Great visit with the reminder of how far Riley has come and though the road ahead may be complicated by the same thing that Saved his Life .. CHOP along with everyone who Loves Riley will continue to fight for him as we all have done from the beginning!

💚❤

~ Riley also had his Dexa Scan done. Results will take a little time but will update when we have them.

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

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Update from Riley’s Ortho appt.

~ Riley has scoliosis. Monday measuring at 17 degrees. It has progressed from the 14 degree measurement in April. He also has 41 degrees of thoracic kyphosis and 27 degrees of lumbar lordosis. Riley’s next appt with ortho was suppose to be in 6 months but they have moved it up to 4 months. At that time they will check the progression. If it has continued to get worse we will discuss treatment options at that time.
In the mean time Riley has a dexa scan scheduled for next Tuesday after his lung transplant appt. That will check bone density. Ortho would like Riley to also be seen again in endrocrine. Not in regards to his adrenal insufficiency but rather his bone health. Between that visit and the dexa scan results we’ll have a better idea if Riley should see the bone health management team. Phew.
The positive in all of this is that Riley doesn’t seem to be experiencing any pain at this time. So we will continue on this Journey and see whoever he needs to see .. Do whatever we need to do to keep him the Happy Loving Life little boy that we all Love.

Riley doing some Mummer Strutting while waiting for the doc to come back.

Riley had his appt with Heart Transplant on Monday. The appt went well. Got the flu shot. Riley’s weight is holding steady at 52 lbs. Labs looked good. Except for his Tac level which was pretty high but we’ll lower the dose and check a level again in a few weeks.
Riley’s need for bone health management is still up in the air. We will see orthopedics in November and discuss further with them. In the mean time Riley will have a Dexa scan.
It’s always Great to go to Cardiology because they have been with Riley since the beginning. Everyone is always so Amazed to see Riley and how Wonderful he’s doing. Dr. Lin had even asked if she could bring in a fellow to see and listen to Riley .. This/Their/Our Miracle child who was 5 and a half years out from a heart/lung transplant! We can always count on Cardiology to remind us how far Riley has come! Not that we could ever forget!
While at CHOP we ran into Red Scorpion who is one of Riley’s Favorite wrestlers from the Monster Factory .. Riley thought it was Super cool to see the other side of Mark (Red Scorpion). The nurse who was caring for a child with a trach. Like Riley once had. Certainly made his day!
Riley also got to see one of his transplant buddies Xavier. It was Nice to see X and how Great he is doing. ❤

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

Riley went to @WWE .. 😊

Riley went to WWE RAW on Monday night in Philadelphia. Had the Best time Ever!!

Great night at the Monster Factory! Riley Loves seeing all his #Wrestling buddies! Couldn’t think of a better way to spend a Saturday night!

Update .. Oncology looked at Riley’s CT and from what they could see they DID NOT see any PTLD! As Awesome as that is they couldn’t see Riley’s gut as they put it so they couldn’t see if PTLD is there. Soo .. Rather then put Riley through something else right now we are going to wait. We have increased his overnight gtube feeds back to 5 nights to try and help with the weight loss and will continue to keep his immune suppression meds decreased. Riley will see heart transplant in about a month and at that time we will check his weight and EBV again. As you maybe can tell this will be an ongoing thing. Forever. Depending on how things go the next step would be to check Riley’s gut which will be through a colonoscopy.
For now .. Riley is living and loving life! Happy to be back at school. We will cross the next bridge when we get there. ❤

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

Riley’s appt with lung transplant went ok. PFT’s looked good. Unfortunately Riley is down 3 more pounds. Putting weight on has been a struggle but to have lost 3 pounds since July is concerning. Reason being Riley’s EBV counts have also been high. If the EBV results come back high again today pulmonary is going to order a full body scan to check for PTLD. Just the thought is terrifying! Please cross everything you’ve got that Riley’s EBV miraculously went down and that if it didn’t the scan doesn’t show any signs of PTLD. Will update when know results.

#TransplantisNotaCure 💚

Riley and Dr Goldfarb ..

Riley ready for his PFT’s.

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