A Lil' Boy's Journey to Live….

Riley’s appt with Orthopedics went well. Not really any changes. Pic on the left is November. One on the right is today. No new fractures noted. Dr Deeney agrees that the infusion therapy is a good idea. He agrees it’s not without risk but if it helps with Riley’s bone density it’s worth doing.
Riley’s next scheduled appt is in 2 weeks for the swallow study to check if he’s aspirating as the lavage suggested. Will updated. πŸ’š


Update .. ❀

Update .. Riley will be admitted to Children’s Hospital of Philadelphia April 23rd for his bone infusion therapy. All goes well he should be discharged on the 26th. Next Tuesday Riley has an appt with Orthopedics to check on his fractures and progression of his scoliosis. Will update next week. ❀

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.

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 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 .. 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 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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