A Lil' Boy's Journey to Live….

Archive for February, 2019

Riley’s appts @ChildrensPhila .. ❤

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 .. 😷

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 .. 💚

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. ❤

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