Riley’s visit with ENT @ChildrensPhila .. 💚

Update … Riley’s lung function has continued to decrease some over the last year or so. During PFT’s he did 2 puffs of Albuterol which seemed to help so he is going to start using an inhaled steroid twice a day moving forward. We did a respiratory panel while in pulmonary and are starting an antibiotic.
Next Riley saw ENT. The Laryngoscopy showed that Riley does not have vocal cord paralysis. The hope was that he did so it could be fixed and he could drink again. However where we thought this was the end of the road .. it’s not! Dr Zur said she can not rule out that Riley has a laryngeal cleft through the laryngoscopy. A laryngeal cleft could also be causing Riley to aspirate. So we signed consent today for Riley to have a bronchoscopy done by Dr Zur. If she finds that there is a laryngeal cleft we have also signed consent for an injection with prolaryn. This would be a temporary fix. Possibly up to a year at which time we could do it again or not or opt to surgically fix it. In the mean time Dr Zur would like Riley to see GI while also consulting with Dr Nance his general surgeon who did Riley’s Ladds procedure along with his various feeding tube placements over the years. Dr Zur would also like Dr Jackson (Riley’s plastic surgeon) involved given his raised pallet.
It’s possible Riley could have what they call a “triple scope” if GI and pulmonary would like to get in on the bronchoscopy.
Right now all of those details are still up in the air. Hopefully tomorrow we’ll know more.
For today .. there’s still Hope!!!