A Lil' Boy's Journey to Live….

Riley has been admitted to CHOP. Went to the emergency dept earlier in the day Monday with a fever .. headache .. congestion .. cough.

So far the Flu has come back negative. Still waiting on the rest of the results.

For now he has had his stress dose steroids .. vancomycin and cefepime.

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Update from Riley’s appt Monday with Heart Transplant. Everything looked Good! Riley has even made it up to 55lbs. Unbelievably March 5th is Riley’s SIX year Heart/Lung Transplant anniversary. That being said a request has been put in for his annual Cath and Bronch for the first week of March. Also during pretesting he will do a stress test for his heart and a CT scan to check his lungs. We will update again when we have a date for Riley’s procedures. The Hope is to do them on his anniversary.

~ .. Riley will have his 6 year post Transplant heart catheterization and bronchoscopy on March 4th with Dr Rome .. Dr Goldfarb and Dr Stevens on anesthesia. Pretesting on the 1st. 💚

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

Riley’s Angel Heart. ❤

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.

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!

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