Day 377 - Pointless ENT Appointment

Tuesday, January 11th, 2022

Today James had a very pointless ENT appointment. The whole reason we were being scheduled was because our Pulmonologist wanted James to get scoped to see if James' tracheomalacia had healed. They did not scope him. Instead they just looked at his stoma and said to keep doing what we're doing because his site looked great. His thought was that since James had a decrease in his PEEP that his tracheomalacia had healed. Mom tried to explain the mess with the trach and insurance. He didn't seem to care and just brushed it off saying that our trach was fine even for 31 trach changes. 😳 That the company that makes the trachs just puts a safety notice of only using a trach for 5 changes as a way to sell more trachs. 🙄 Yet no one we have talked to has ever heard of a patient never getting a new trach. James' cuff doesn't hold the water in the balloon properly after so many uses which is the reason for his leak. And if it were to rip we would need to go to the hospital. The doctor just agreed, "Yes, you would just go to the hospital". Like it's no big deal. 🤯 So he wanted to order James a regular length trach and suggested we just put it in at home. What if James still has tracheomalacia and his ventilator numbers sky rocket? Mom and the nurse were concerned about doing this at home. The end result being that when/if this new regular trach comes in we will come into the office instead to have the doctor switch the trach and THEN he will do a scope. 🤷🏻‍♀️

Side note: You know you're a Mom when... you break your toe on a basket full of laundry. 🧺 🤕

P.S. Do you follow James' journey? James would love to read an email from you. His email is JamesWestonAbramowitz@gmail.com. How heartwarming for him to receive these and fun for you to get a response from him in like 10 years...