With the change in diet, comes changes for his GI system. Brayden's GI system can be a bit temperamental. We are working towards him becoming more regular, if you get my drift. And we have had to give him some help with moving things along...sometimes it's not so pretty. Oh, he can be so miserable if he is not regular and too many days pass.
The big goal for his food is not only to handle being off the ketogenic diet but to increase the rate of his food. For over 3 years, Brayden's food runs at 42 ml/hr and that is slow. His food is running constantly and we are still not getting all of his food in him in 24 hrs. Between riding the bus, activities at school, moving him or anytime he needs to be unhooked from food, we are just not getting it done. And every calorie counts. I am trying to increase it without causing an increase in vomiting (he is fed into his j-tube but it still can aggravate him enough it cause vomiting, even if he does not vomit the food). I increased to 43 ml/hr a few weeks ago. Last night I increased to 44 ml/hr. My practical goal for his rate is 45 ml/hr...the pie-in-the-sky goal would be 50 ml/hr. Any mom who handles those feeding pump rates knows just one number up or down can be a dramatic difference.
1 comment:
it's great he's tolerated coming off the keto diet so "easily" - hopefully the seizures you're seeing will dissappear as his body gets used to his new food.
it's also great that he's tolerating theincrease in feeds - it's hard to get so much in with such a small period of time. does he use duo-cal? many of my students use it to add calories without adding extra volume to their tube-feeds.
how's his incisions looking? i hope the yellow icky is cleared up and he's doing well! :)
thanks for sharing him with the world. he's such a sweetie!
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