A Lil' Boy's Journey to Live….

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. ❤

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