Day 419 - Real Passy Muir Trial

Tuesday, February 22nd, 2022

In the morning we finally had James try his Passy Muir Valve with the step down adapter. Our appointment was at the hospital. We crammed into this tiny little office, Mom, Dad, our nurse, the Speech therapist and her soon to be replacement. Mom held James on her lap. James cried so loud and for so long! This was the first time we really heard James cry. Previous to this we heard him for cry for a few seconds when he had his ET tube upsized. This was different because James was aware of everything going on. Not only could he hear himself wail but he felt air and secretions in his nose and mouth for the first time. Mom lost it emotionally. We assumed we wouldn't be allowed to video, but come to find out afterward we could have. We are allowed to do this once a day for 3 minutes. She told us we could try again at home later today, since we took it out early. It's very important to deflate the cuff or else he will not be able to breathe.

In the evening at home we tried the passy Muir again and recorded it. Video below.

Warning the video below tends to induce tears. 😭

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...