Day 153 - G-tube out 4x in 4 weeks!

Tuesday, June 1st, 2021

Changes/Updates:

• We have a new doctor starting today. He's had James a few times but originally had James when he was a micropreemie. He is only filling in for today and tomorrow.
• Increasing prune juice to 10ml from 5ml to help him with a bowel movement.
• James feels warm today and normally runs "cooler" temp at 97.4, but a 99.4 temperature doesn't count as anything.
• Gtube came out this morning! Balloon popped again due to James bearing down throughout the night during an episode.

James is still irritable and sometimes inconsolable. Could it be a sedation wean? Gas? Reflux? Stooling? We don't feel that it's just him needing to be held because he will sometimes continue the episode after he is being cuddled. We managed to get some excellent photos of James smiling because his favorite RN and RT were giving him attention. We moved his crib to the middle of the room to get a change of scenery. 

He had some major afternoon and evening stools after his PRN glycerin. And a major episode desating into the 50s after a bowel movement. Last night we had to give him a morphine but tonight we made it through. Around 11pm Dad was saying goodbye to James (who was sleeping) and that sent him into an episode that was about a hour long of consoling including 3 diaper changes and a bed sheet change. Oh Dad! 🤦🏻‍♀️

As far as the MiniONE GTube button we are ordering we are getting a 14FR 1.2 diameter. Gastrostomy tube size consists of 2 numbers: the tube diameter, and the length of the tube within the tract. Mom reached out to her Trach group and connected with a Mom who has also had 4 Gtubes out within a month! For her the solution was to correctly size her baby's Gtube with this tool (photo below) which her GI consult was able to do for her son bedside. At our hospital GI would not. So they went ahead and just ordered the 1.2 diameter and hopefully that is the right length. 🤷🏻‍♀️

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