Day 238 - First Day Home
Wednesday, August 25, 2021 Early Morning: After getting James settled for the night, Mom posted up on a mattress on the floor next to James’ crib in our living room and Dad slept upstairs. They agreed that Mom will take the first few nights and Dad will take the first few mornings until things get routined. James decided to continue his late night/early morning routine of fighting sleep, which means Mom didn’t get to sleep much at all. She gave him his Clonidine and other meds at 2am and unfortunately the home vent setup creates a ton of water in the circuit which flowed all the way up to James’ trach and nearly water-boarded him. Mom was able to navigate through this and eventually get James to sleep around 4:30am. Dad came downstairs to give James his meds at 5:45am to find Mom just getting to bed. Since James was fighting sleep, Dad held James for a little while to begin the day. With Mom’s coaching, we found a position that worked real...