Day 685 - ENT Appointment 👂👃 & First Diner Experience 🍴
Tuesday, November 15th, 2022
We had our appointment with ENT in the late morning. We really like our ENT Doctor. She is very honest with us, answers our questions, and is always willing to help us get the help we need. Our last appointment was a few months before James was taking any trials off the vent, so now we could tell her the great news that James was now up to 3 hours 2x/day. This Doctor specifically manages his trach not respiratory. Basically they are the ones that do the tracheostomy surgery and also decide the decannulation process. Since James no longer has tracheomalacia and has really never had any other issues with his trachea we have just been discussing next steps once James is off the vent completely.
During the appointment we let her know are concerns with the pulmonology nurse practitioner not really being on the same page with the pulmonology doctor. We also discussed the fact that the NP said that they don't recommend long stints of using the PMV, they don't do sleep studies, and they don't cap. Well the ENT doctor was very confused by this. She said sometimes they don't do sleep studies because it's hard to get the correct data, but she said that everyone should be capping before decannulation. Obviously once James is off the vent the ENT doctor will have full control over what we end up doing in regards to decannulation.
Capping is when a small red cap is put on the end of a trach. No air can go through the trach at all and they must use their nose or mouth. It is the very last stage in order to tell if the patient is ready to have the trach removed. From there they simply just place a bandage over the hole. It will close on its own and could take up to 6 months. After 6 months they may need to close it surgically.
At the end of our appointment the ENT doctor texted our pulmonologist to see if she could get some clarification for us. We do have a phone call set up for the end of November with him because it was the only way we would be able to speak with him since we can't get in to see him. He responded and said that he would like James to continue increasing his daily sprints and that he would like to do a sleep study. So there we go once again are pulmonologist needs to get on the same page as his NP. 😑
Then we went to Mom's place which is an awesome diner. Everyone loved James! He also was enjoying turning around and staring at people as they ate. 😆 He tried grits but it's still getting used to the texture.
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