Day 399 - Decreased PEEP to 8!!! 🫁 ⬇️ 😁😁😁

Wednesday, February 2nd, 2022

Today James had a pulmonology appointment in the afternoon so we needed to cancel physical therapy. We had several things happened during our appointment.

1. 🫁 ⬇️ We decreased James' PEEP from 10 to 8! This is a huge win! We breathe at about a 5. Just a refresher... PEEP is pressure in the lungs at the end of each breath. In mechanically ventilated patients, PEEP works against passive emptying of the lung and collapse of air sacs. Collapse of air sacs can lead to incomplete inflation of the lung on the next breath and reduced oxygenation.
2. 🗣️ Our Pulmonologist wrote another order for a Passy Muir Valve that we should have received by now. In the last month we made no progress with speech therapy, because we were waiting to get the Passy Muir Valve from our DME. He was curious why our DME medical supplier never even contacted us with an update about it in the last month. So his office called the DME while we were there and they said their excuse was that they were "out of stock". But then when they asked to speak to the Supply Manager, all of a sudden they were back in stock. 🙄 Yes, now the entire office sees what Mom deals with. They suggest we find another DME who isn't going to 🤬 us around.
3. 💉 James received his two synagis shots in his thighs. 😢 He cried so hard.
4. We received the OK to deflate his cuff for speech therapy.

Mom then went online and purchased 2 standard trachs from eBay. Over the last few days it has been ridiculous with the back and forth BS. We can't wait for the DME or insurance company. Mom tried to get some trachs from other trach Moms but no one ever comes through with those!

In this first photo below, you can see his two bottom teeth. 🦷

Yes we are squeezing into 6-9 months shorts and had to cut a slit.

He caught the camera looking at him.

He puts these on his head to go to sleep.

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...