The Journey of James Weston

Wednesday, November 9th, 2022 It was a busy day. We started out with a very early morning pulmonology appointment. These photos are of James around 8:30am before we left. Yes, he is still on Juju time! 🕣 At our appointment, we did not get to meet with the doctor again. The trade off is that although morning appointments don't get to see the doctor they are a lot quicker. So instead we met with the nurse practitioner. During the appointment she mentioned that a new study recently came out stating that the passy muir valve should only be used for short periods of time (30 minutes) when trialing off the vent due to this causing speech delay. 🤷🏻‍♀️ (This makes absolutely no sense and we could find no such study online). She also stated that they do not do sleep studies or capping. (Again, what?!) She said basically the idea is that as long as they have the trach their body will automatically want to use that instead. What is interesting, is that it is completely unheard of to skip t...