Day 204 - More LTV Technical Issues & Introducing Lactose

Thursday, July 22nd, 2021

Update/Changes:

• Removed all Prune Juice. Started Lactulose instead, 5mL twice a day. We were not seeing results from the prune juice and 30 mLs was a lot to be taking the place of breastmilk.
• Ended up doing a 2nd glycerin at 11:30am. James eventually had a bowel movement.
• PT stopped by to work with James and hung suction tubing across his crib to hang toys from.
• During rounds, it was discussed that the LTV trial last night was stopped due to James not tolerating it. Mom corrected them and letting them know that they were actually having difficulties and then they decided to bag him, so no James didn't have an issue with the LTV he had an issue with getting bagged. It gets pretty frustrating how many people try and cover their ass when they're talking with the doctor.
• 5 hours on the LTV during day shift/ night shift
• ENT came by to look at his new granuloma and she said it's fine. She recommended putting aquaphor on any skin in the back of the neck that looks raw and she does not recommend using Nystatin powder everyday, only as needed. Great clarification! Also on a side note, Cigna sent us a letter saying that everyone in the ENT group is out of network. So every time they pop their head in the room it's $500. Fun!
• Child Life came by to see if there's any toys that she could bring us. Mom let her know that physical therapy was using a super lightweight rattle that James enjoyed. It was made by Magical Innovations. So now we are on the hunt to find one!
• The LTV continued alarming saying POWER LOST. This is the second LTV with alarming issues. Come to find out the RT plugged in the ventilator into an outlet that was not working. The machine was relying solely on battery power. James was doing a 5-hour stint on a battery that fully charged only last 5 hours. But after so many alarms we got another RT to come figure out the outlet issue before there was a serious problem.
• Mom had to run home and get some more frozen breastmilk. Stopped by Starbucks on the way back. As she was going through security. The security guard dropped Mom's purse right onto the cup, knocked it onto the ground, and said "how did that happen?". He let Mom know that the cafeteria also serves coffee. 👍 
• Mom walked in to find an RT training someone about to put in more water in James' trach cuff. She wasn't even our RT today. Mom let her know that we just did the trach change yesterday and we just put in 2mls of water, he is going to make noise he can push around the trach. We hate that we is always being used for training and practice. They also definitely over suction here in the PICU. 

#protocol or over compliance?

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