Day 193 - Disney Dad & Juju Helps with Bath Time

Sunday, July 11th, 2021

Morning:  James had a solid night. Only a few small episodes, but the night nurse did a great job at helping James and giving Dad permission to sleep for a few hours. 

12am - small episode. Needed boost

2am - rectal temp compared to arm pit. 98.4 vs 97.4. WAT score was a 4. Decided to rub his head and use pacifier to console instead of morphine. Just gave regular dose of clonodine and methadone. 

5:45a - WAT score of 6. Just did he clonidine and that settled him. 

Our daytime nurse asked in rounds if the 6 WAT score is appropriate due to several check marks getting him to a 2 (sweating and yawning). The consensus was that those are withdrawal symptoms and if James shows one more getting him to a 3, they will offer morphine if he’s not within a few minutes of his scheduled meds. Dad requested to go through the drop down menu before morphine (diaper, suction, vent, and position change) to see if James can self soothe. 

Dad is starting to get more comfortable with moving James and holding him and putting him in different positions.  They are starting to bond and like each other (except for the one photo that Dad captured 😂). Dad loves to play Disney songs and movies during his stay.  We watched Aladdin and Coco, and listened to an excellent playlist on YouTube. 

2:45pm Mom and Juju switch out with Dad so he could get work done. At this time we are still only allowed one visitor and one badged parent. Mom, JuJu, and the RN gave James a real bath in his grey tub that he really enjoyed. Mom then changed trach ties.

5:00pm Juju was able to hold for a little bit and entertain James with puppets before getting on the road. 

6:00pm James was having an inconsolable event for about an hour drenched in sweat and was very irritated. We were very close to giving him morphine. His clonidine was due at 6pm but he didn't get it until about 6:20pm, may have been why he started to spiral. Mom was able to get him comforted by 7:00pm.

7:00pm We got a new night nurse tonight. It's crazy how there's very little consistency with scheduling in the PICU.

For the first half of the night which we call 7pm -1am James required suctioning, diaper changes, and venting pretty consistently. 

P.S. You can email James your love and support as often as you’d like. Mom and Dad read these emails to James as they come in. We all love them! JamesWestonAbramowitz@gmail.com