Jackson made the 6hr trip to Philadelphia last week for his first ENT evaluation since getting his trach in January. Unfortunately it was a discouraging appointment as we left with no steps forward, only more concerns and more appointments. Jackson is not tolerating certain things very well so his surgeon is concerned there is airway damage above his trach or that he is still refluxing which is causing damage. After a lot of research we have agreed on a treatment plan to figure out what is going on with our little man. First we will travel to CHOP for a GI evaluation that will hopefully include reflux testing. After we get those results we will book a trip to the operating room with ENT and GI. Together they will perform another bronchoscopy (going down the airway with a camera) to determine if there is damage and what is causing it.
It's not easy on anyone to make the trip however we know it's best for Jackson right now to be with the best of the best. No dates for the appointments yet but we are hopeful to have this taken care of by fall!
