Wednesday, February 8, 2012

Feeding Tube Awareness- Micah's day

Micah has a bit of a rigorous tube feeding schedule (although not what it used to be, at all! Phew!) His stomach for whatever reason is unusually small (could be not having any food for days after birth, his nissen fundo surgery, ???) He gets 4 "boluses" (a large quantity over not much time) and he gets continuously fed overnight. His boluses are given to him about 1/3 or 1/4 at a time, at 15 minute intervals (so his first feeding is given at 8:30, 8:45 and 9:00, for example)
His tubie schedule:
8:30-9:30- 4.5 oz food, 1 oz H20,
11:30-12:30- 6 oz food, 1 oz H20
2:30-3:15- 4.5 oz food, 1 oz H20
5:30-6:30- 6 oz food, 1 oz H20
8:00- Meds and 1 oz H20
8:30pm-5:30 am, 13 oz food, 3 oz H20.

Overnight (and sometimes during the day) his food runs on a pump that gives it to him at a steady rate. He has significant reflux issues which are currently controlled by meds, and one of his biggest vomiting triggers is too much at a time. We've made significant gains in the last few months (one happy mom!).

He currently gets about 1200 calories a day, and 8 oz of extra water. i never would have thought a 2 1/2 year old would eat that much normally.

Sadly, he normally gets pediasure. it's pretty much crap in a can, but it has a lot of advantages (safety, consistency of calories, portability, ease of feeding). Sometimes we do a blenderized diet, where we blend whole foods or baby foods and put it through his tube. My own OCDish tendencies muddle that process, trying to find perfect combo's of foods to get him what he needs. For example (Here's one of many pages of my calculations). He needs 30 calories per ounce of food, which is a little outrageous, really. The only food i can compare it to is full fat full sugar pudding. Ew. On top of that, you have to at least be somewhat close on fat and protein as well.

1 comment:

  1. You are strong and brave. How is Micah's prognosis?

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