Common Post-Transplant Questions Answered, #1

1. Will he start eating? Can you get rid of the Gtube?

Not sure. Eating is very complex. You don’t realize how many things factor into eating until you or your child has a problem with one or more of the factors.

One of the factors has surely been nausea and general icky feeling from his kidney failure. Teddy’s likely felt pretty crappy since he was born. When you feel crappy, you don’t usually want to eat. He’s NEVER been a good eater. Ever. From the day he was born.

Another factor has probably been his very active gag reflex and self-protective tongue-thrust. When he was younger, it was just a reflex with him. He thrust things out of his mouth with his tongue. Now, I personally think it’s somewhat psychological. He has a complex relationship with food and with things in his mouth, and he doesn’t generally trust things in his mouth. He gets panicky if he loses control of items in his mouth – like crumbs.

Another factor? He’s not generally hungry. This gets kind of challenging – he has to be given calories and fluids to live. But giving him all the calories and fluids he needs via his tube means that he’s really never hungry. You usually don’t want to eat if you’re not hungry.

Vomiting probably plays into it. Food makes him vomit. Why would he want to eat it?

Habit. He’s not in the habit of eating.

There’s just a lot going on there.

We’re working with an occupational therapist, but for the most part – Teddy just has to want to eat.

Before his transplant, he was taking some of his blends orally (maybe 20 mL a day) and some fluids orally (maybe 10-20 mL a day) and some meds orally (5 mL). All by syringe. He will suck from a straw or drink from a sippy, but he won’t swallow the water he gets that way – he spits it out. I don’t know why.

Would it be nice to have a kid who just eats food like every other 20 month old? Yeah, it would. But it honestly also kind of irks me that this is what everyone asks. All the time. Will he start eating normally?

Because I just don’t care that much. Now that we’re past the transplant, the feeding issues will probably take on more of a focus, but for the most part, you can’t force a kid to eat. All of you parents know this. Some kids start eating right away. Some kids never have eating issues. Some kids are still 3-4 years past their transplant and they still don’t eat.

So… we just don’t know. Maybe. Maybe not. I’m cool either way.

 

As far as getting rid of the Gtube, I will not be comfortable removing the tube until he’s been eating all calories orally and drinking all fluids orally and taking all meds orally for at least 6 months, including through an illness.

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