Day 379 - Trach Change Switch Up & Waiting on DME Supplies

Thursday, January 13th, 2022

Today our M,W, F nurse worked the morning hours again to get some extra hours. James had some eye patching, playing in the bouncer, sitting up in the boppy, and some more floor tummy time time. Mom was finally able to take a nap while the nurse was watching James. You can only go so many days on less than 4 hours of sleep a night.

We ended the evening with our regularly scheduled trach change. This time we switched up roles. Dad took the trach out disconnecting him, and Mom put the clean trach in. There is a lot of anxiety every single time! Don't think that will ever go away, and it shouldn't! It's better to be on your toes than comfortable, in the situation. 

We were also going to do a circuit change but we are running low on circuits. Once we receive our next supply order from our DME we can do the change then. We have found that it is important not to do weekly or biweekly changes "just because". The things connecting him to the ventilator are made out of cheap pieces of plastic. Things break and you want to have backups. Don't get us wrong none of these things are cheap in cost, just cheaply made. Hopefully we get our supply order 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...

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