A G-Tubie's Schedule

Evie has mild laryngomalasia and aspirates when she's tired.  But she can eat about 20 ml of formula before she fatigues.  She gets sloppy when she gets tired.

Here's a sample G-tube schedule for us, although it keeps evolving as she grows:

9:00 am           Feed by bottle
10:00 am         G-tube 85 ml at 60 ml/hr
12:30-1:30 pm Feed on demand by bottle
2:00 pm            G-tube 85 ml at 60 ml/hr
5:00-6:00 pm    Feed on demand by bottle
7:00 pm           G-tube 85 ml at 60 ml/hr
9:30-10:30 pm Feed on demand by bottle
12 am               G-tube 70 ml at 60 ml/hr
2 am-8 am       Continuous feed of 150 ml at 25 ml/hr

If she drinks more by bottle, then we reduce the amount by G-tube.  The continuous feed, when it was suggested to us, was a life-changer. We now get about 5 hours of straight sleep at night if she doesn't wake up screaming because of gas.  More about gas later.

I hope this helps someone, because I couldn't find a schedule with volumes or rates anywhere, and it would have helped me a lot to see an example written out, rather than just being told to feed her every few hours. 

The picture shows her using an Avent bottle because that's what I started with, but once we found out she was aspirating and we had to use thickened formula, we switched to a standard Dr. brown bottle with a Level 3 nipple. 

No comments:

Post a Comment

Evie's Adventures in Storyland, from a sensory sensitive kid's point of view

Hi Evie fans!  Our first post-pandemic trip was to the  Storyland amusement park in Glen, New Hampshire !  Evie did well with the 2.5 hour d...