We’re on the right track..maybe?
We left the hospital after another 7 day stay with:
a bridled NG tube
a feeding plan that added continuous overnight feeds
a feeding pump
acid reflux & blood pressure medications
2 new specialists
4 new diagnoses
what we did not leave with was answers
We had a solid plan. We were going to do 3 bolus feeds during the day giving Jude plenty of rest between feeds and one 10 hour continuous feed overnight. Each Saturday we were to increase the rate of the feeding pump until he could tolerate 240ml/hr without vomiting. Upon completion of those weeks we were to add a feed and remove time from the overnight feed. Sounds simple right?
Remember all those times you complained you’d never need math outside of school
Jude exists on a very fine balance of what does and doesn’t make him sick. What he can and can not tolerate. It’s all a juggling act that took us far too long to figure out how throw one ball into the air while still keeping your eyes on the others.
we never made it past the 240ml/hr
Every time Jude couldn’t tolerate a feed we had to backtrack what we were doing. Fine tune the kinks of tube feeding a child who didn’t have the ability to hold over a certain volume. We are 8 months into tube feeding and it’s still a work in progress. Jude continues to eat 3 bolus feeds during the day and one continuous feed over night to get in his 1200ml/day
Feeding intolerance at its finest