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. 💚
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.
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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 . ❤💚
Riley's Mom Blog 