feeding therapy « Struggling to Thrive

We settled in to KKI but the vomiting didn’t stop. Our son stopped being able to keep anything down at all, even water. The nurses were insistent that he was keeping some down, but they weren’t with him all day. I was adamant they needed to do something but wasn’t sure what exactly that something would be. After the weekend the senior doctor returned and checked on us early in her rounds. She told us he looked OK but she was going to draw labs just in case. Once she received the results that would inform whatever our next steps would be. I settled down with my son for a nap and did my best to keep him comfortable while they worked out a plan.

Within an hour a skittish looking nurse came and woke me up. When I say skittish, her face was completely calm. Her eyes looked terrified. She told me we were being transported. “OK… can I take care of this when my son wakes up?”
“No,” she said. “They’ll be here any minute.”
“Oh… OK,” and I started packing things as quickly as I could. The nurse reassured me that they’d figure something out as far as the items we had to leave behind. I barely got everything shoved into a bag before our son was being woken and loaded up onto the stretcher for transport. Apparently his labs had shown a significant amount of dehydration, even though he didn’t appear dehydrated when examined.

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Sometimes people say insensitive things. It’s generally not intentional, and I prefer to assume everyone has good intentions at heart. In the spirit of those good intentions, I would like to differentiate between what constitutes needing a g or jtube versus being a, “picky eater.”

Picky eaters are a struggle. Their parents spend a lot of time encouraging and coaxing them to eat, and they frequently refuse to try new things. At the end of the day though, the child does eat. Their food stays in their stomach. They receive enough calories and nutrition to grow. While frustrating, they can generally be expected to at least pick at their food if their belly is empty, provided you can find something that appeals to them. Since they do eat, there are usually a few fallback foods they’ll consume. There’s no expectation that they would truly starve to death if you didn’t produce the perfect series of meals (though it may feel like it sometimes).

The difference between that and needing a g or jtube is that tube-fed children really would either starve to death or be so nutrition deprived they wouldn’t be able to grow if not for tube feedings. At the table they have the appearance of a picky eater, from start to finish. They refuse to eat foods provided. Additional foods are also rejected. When pressed, they may take a bite or two. The experience displays everything you would expect from a particularly challenging meal time with a picky eater. For tube fed children, it’s like this every meal. There is no food you can offer that they’ll gobble up (or if there is, it’s nutritional value is extremely limited and it isn’t viable to be a primary source of nutrition).

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