Day 679 - Pulmonology Appt, Medicaid Meeting, & EI Therapy
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 these steps before decanulation. To give you an example, out of 8,000 trach mom in a Facebook group that has been around for 13 years not one person talked about skipping these steps. We asked the nurse practitioner about the next step for sprinting off the vent schedule, letting her know that he was currently at 2 hours twice a day. She said she would need to talk to the doctor and then call us later.
Later in the day, Mom received an email from the nurse practitioner with two scanned orders attached. The first order was for a change to his vent settings. We were told to decrease his rate from 20 to 15, and to decrease as pressure support from 15 to 10. This order also stated that we should increase to 2½ hours twice a day. Our next pulmonology appointment is not for a month... So they expect him to only increase by 30 minutes for the whole month...? 🤷🏻♀️😳 Mom replied to her email asking her about increasing after 2 weeks (This email would never get a response). The second order was sent to our DME for PMVs.
Today we also met with our new Medicaid case manager who has been super helpful. She was very nice and overall just did her monthly assessment asking about updates.
Lastly we had our early intervention appointment and James was happy to show off his toys that he brought from Juju's. He has vintage kitchen play food. James likes to take the food out of the can, put it back in, put the lid on, and then shake it. James is really good at following directions!
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| Closest we have come to tummy time in a while! |
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