Day 382 - Movie Day in Bed!

Sunday, January 16th, 2022

The night was rough because every time an alarm went off both of us jumped out of bed to see what was happening. Most of the time, the ventilator was just alarming LOW PEEP because James has a leak in his trach (his cuff won't stay inflated). It's not a terrifying alarm, it's just that it's the same exact sound as the DISC/SENSE alarm 🚨. And that one is terrifying. 🤷🏻‍♀️ Below is a YouTube video explaining all of the things that could be causing a DISC/SENSE alarm. Overall James slept well. But this was the night Mom would have normally slept upstairs by herself so it was just another night shift for her again. Hopefully she'll get to take a nap sometime this upcoming week. 😆 The hardest part was on our backs. Leaning over the Pack N Play to change diapers, suction, or do anything with his GJ. We figured out a trick which was to sit in a chair and lean over. I think for the most part the goal is to only have him in the back and play for sleeping and to have him out most of the time.

We watched some Netflix, and a little Cocomelon, did his treatments, gave him meds, and cleaned his G-tube and feeding bag all from upstairs. It was like a mini vacation, just sleeping upstairs as a family. We even brought up the mini barbie fridge for the formula (we originally were using this for breastmilk). It was a lot of equipment and supplies, a lot of trips up and down but totally worth it to do it every weekend!

Around 8pm we received a call from the on-call staffing agency that our nurse for Monday was calling out. Kinda sucks since we have a GI appointment tomorrow at the hospital, but things do come up.

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...