The Journey of James Weston

Saturday, February 5th, 2022 Mom and James had a good morning while Dad fed the homeless at the PB&J for Tampa Bay meet up. When he got back he played guitar for James. Music will get James' attention and focus. He could watch Dad for hours. Dad only knows three songs though, so please pray for Mom. 🤣 James recently learned to beatbox, so we posted a video below. We finally received our passy muir valve in the mail from our DME! Yay! We have a speech appointment on the 17th and James will get to try it out! James has been rolling a ton on his side, but only when he wants to. He doesn't like to be forced. So when you're not watching there he goes! 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...

Friday, February 4th, 2022 This week completely drained Mom after following up with the DME on orders and dealing with insurance issues. She is looking forward to sleeping on Saturday night. No nursing tomorrow.  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...

Thursday, February 3rd, 2022 Today James started the morning at 7am and we began on the floor. Mom worked with him on his tummy time. It's important for James to just lie on the floor and explore. Then he enjoyed his time in his bouncer and later practiced playing the piano. In the evening we brought James over to the kitchen table to sit with us at dinner. He had tastes of orange for the first time and loved it! 🍊 Thursday is trach change day and Mom and Dad had their 40th trach change, or something like that. No issues! 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...

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. 🫁 ⬇️ 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. 🗣️ 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...