Today kicks off Feeding Tube Awareness Week.
So let’s talk about the feeding tube. Teddy has a feeding tube. He got it when he was not quite 3 months old, because feeding was getting more and more difficult and unpleasant, and he was starting to lose an absolutely unacceptable amount of weight. Teddy’s particular brand of kidney failure meant that his body peed and peed and peed and peed like crazy. Your kidneys filter out garbage, and they also decide how much fluid to retain in your body, and how much salt and other electrolytes to retain. Teddy’s kidneys didn’t do any of that – they just peed out everything. So Teddy needed more fluid and more calories than other kids his age, in order to keep up with what his kidneys were dumping out.
The problem with that is that kidney failure also makes you pretty nauseous. So even though I was feeding him basically around the clock, we just could not keep up.
Life got so much more pleasant after the feeding tube. No more force feeding. I could feed him as much as he wanted orally and then just put the rest in the tube. It was awesome.
And even though he eventually stopped eating orally entirely, and now we have a likely huge long road ahead of us to get him back to all-oral eating, I don’t regret it at all. I can’t imagine how much harder life would have been thus far if we didn’t have the feeding tube. It has, quite literally, kept him alive. It got him his transplant (without the feeding tube, I doubt very much he’d have hit transplant weight yet).
It is, at times, a major hassle. I won’t pretend I don’t long for a kid who just eats food like regular kids. I won’t pretend that I relish preparing a feed every 2 hours, every day, and setting up a feed for overnight, every night. I won’t pretend that I don’t wish that I could just hand him a sliced apple for a snack, instead of having his snack time involve two giant syringes, a blender, and a plastic tube.
But the upsides outweigh the downsides for us. By a long shot.