Day 188 - PRN Tylenol does the trick!

Tuesday, July 6th, 2021

Updates/Changes:

• Today his 3 bolus feeds ran continuous. He did not spit up today. 

After the Doctor did his rounds the Discharge Coordinator stopped by to go over nurse staffing for overall discharge information. But at the door was the next person waiting for us to finish talking. It was someone from OT to work with James. So because there was a lack of social acuity we needed to cut our very important conversation short to accommodate her looking at her watch. 🙄

James then had OT/PT. He slept through the whole thing. He really seemed like he had received strong sedation but he hadn't. He was lethargic. It was a little odd. Maybe James was just trying to get out of physical therapy. 😉

In the afternoon James was a kind of inconsolable still showing withdrawal symptoms so we gave him a dose of Tylenol. He then slept great from 4:30pm to 10:00pm. 

Evening: 

We gave James a "PICU bath". This is where we just wipe him down with basically baby wipes. Definitely not a bath. 😒 Can't imagine 6 months of only this. 🤯 Gross.

10:00pm - 2:00am - Trying to get James to settle as well as Mom constantly turning off feeding pump alarms because the nurse didn't hear it. James is going through withdrawal again. Tried changing his diaper several times, suctioning him, venting his tube, used a vibrating bumper (yes it's orange and in a special closet for Child Life in the cardiac unit 😉), shaking the crib, laying him on his side, etc.

5:00am - Needed suctioning, was desating

6:00am - Needed suctioning and diaper change.

Very little sleep, with no hope to get naps in during the day...

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