Day 447 - Speech Appt & Vent Delivery

Tuesday, March 22nd, 2022

We had an early morning speech appointment. The purpose of the appointment was to prepare us for the swallow study next week. James used the passy muir valve but cried this time at the end probably because Mom was holding him. 

After the appointment a respiratory therapist from our DME was supposed to come right afterwards so we rushed to get home. She ended up showing up 1.5 hrs late. Our expectations of our DME are so low at this point. When she showed up James was finally taking a nap. She put in James' settings to the new ventilator and took our broken one back with her. 

Mom had purchased some fabric trach pads on Etsy that a ton of Trach Moms had recommended. It turns out they were too thick and not allowing a good enough connection to the stoma. This caused a drop in his tidal volume and oxygen. Once we switched back to the 2x2 gauze his numbers went back up. This was after a two day investigation, asking advice of other Trach Moms on FB, calling the Pulmonologist, and monitoring him extra closely. Then Mom finally figured out why the numbers were dropping. That's why it's always important that if you are going to make a change, just do one at a time. Too many variables make it hard to see what the problem is.

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...