A Lil' Boy's Journey to Live….

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Update after previous post.

After posting about Riley’s biopsy results we received an email from lung transplant saying there was one more thing that recently resulted from Riley’s bronch that they wanted to discuss.
Some of fluid tested from Riley’s bronch is concerning for aspiration. As aspiration can cause chronic rejection they would like to get some more information to ensure Riley is not aspirating.
They would like Riley to complete a swallow study. The request has been put in by transplant. We will call to schedule the study. Will update when more information is available.
❀

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Riley’s 6 Years Post Heart/Lung Transplant .. πŸ’š

Riley’s Heart and Lung biopsies are NEGATIVE for rejection!! Yay!!
His lavage is Negative for all viruses and the bacterial culture is normal respiratory flora to date. The bacterial culture result should finalize tomorrow.
The mosaic air patterns in Riley’s lungs were more prominent than at the last CT. That could be Possibly a sign of chronic rejection (Bronchiolitis obliterans). However Riley’s PFTs haven’t changed and he isn’t showing other symptoms. So for now we’re going with everything is Good until if/when Riley should become symptomatic of chronic rejection . β€πŸ’š

Riley’s appts @ChildrensPhila .. β€

Riley had a follow up appt with lung transplant from his inpatient stay last week. Also had an appt with bone health management (endocrine).
Lung transplant appt went well. PFT’s looked good. Riley’s seems to have gotten past his bout with Coronavirus. Friday he will have his annual CT scan while we are at CHOP for pretesting for Monday’s bronchoscopy and cardiac Cath.
Appt with bone health did show that Riley has low bone density. > 2.5. Given that Riley will be on steroids forever and already has had 3 fractures we are going forward with the plan to do infusion (IV) therapy. The infusion med is called Zometa. Because of the possible side effects the infusion therapy will require a 3 day hospital stay. To be repeated again every 6 months. Depending on Riley’s reaction after the first treatment will decide if future therapies also will require a hospital stay. The plan is to do the first round of therapy in April.
Will update again when we have a date for therapy. Also will update for Riley’s upcoming appts on Friday and his procedures on Monday. ❀

Update from Riley’s stay @ChildrensPhila

Update .. Given that Riley is asplenic, adrenal insufficient and overall immune compromised the decision was made to complete the 48 hours of IV vancomycin and cefepime even though we know he’s positive for rhinovirus and coronavirus. Wednesday Riley’s fever didn’t go above 99.8. Assuming Thursday the fever stays down Riley should be able to discharge after his last dose of IV antibiotics. Continuing at home with stress dose steroids and breathing treatments.
Fingers crossed! ❀

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

~ pic is just Riley being Silly Riley. Even if he’s on contact at the hospital. 😊

Riley’s been admitted to @ChildrensPhila .. πŸ˜·

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.

Visit with Heart Transplant @ChildrensPhila .. πŸ’š

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. πŸ’š

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

Riley’s Angel Heart. ❀

Visit with Lung Transplant @ChildrensPhila .. πŸ’š

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!

πŸ’šβ€

~ 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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