I thought long and hard about what to post for the last day since our Facebook and Instagram posts covered quite a bit in a short period of time. I realized that we get asked a few of the same questions somewhat regularly, so why not make a FAQ post?
Keep in mind, these are questions we get asked and our response is not representative of everyone’s journey with feeding tubes.
How long will Wyatt have the feeding tube?
We don’t know. He will have it as long as he needs it. For him to not have it, he would be required to take all of his daily calories orally. He currently takes 0. We have hope that one day we can transition away from tube feeds, but for now it’s keeping him alive.
Why can’t he eat by mouth?
We don’t know. He ate orally for about 10 months his first year. Around 8 months he began a rapid decline in what he would tolerate, then completely refused. Current theories include his reflux became unbearable, around 6-8 months sucking stops becoming a reflex and becomes a skill and he didn’t make that switch, or since he was working so hard to try to breathe and eat, he stopped eating so he could breathe. But those are all theories, and the truth is we may never know.
Why can’t you just not feed him? If he goes long enough without eating, he will eventually, right?
Nope. It’s not that he’s a picky eater or doing this behaviorally to get what he wants. So we can’t apply a behavioral approach to it. We tried this long ago before transitioning to the nasal tube, as we wanted to be sure this was what he needed. He ended up hospitalized. It wasn’t because he was doing this behaviorally.
What all does it involve? Is it easy? Does it hurt?
These are actually some of our favorite questions! It involves quite a bit, but it’s now routine for us. It means we have to prepare his food, load up the feed bag, prime the bag, attach, and go! He’s fed 20 hours a day, so we refill his bag throughout the day. We also give him his medicine through his feeding tube. It wasn’t easy at first, but now it seems like second nature for us. So yes, it’s easier now. It wasn’t before.
It doesn’t hurt to get him hooked up to feeds, and it doesn’t hurt when he’s fed through the feeding tube. We imagine it hurts a bit when it’s changed (under sedation in the hospital) every 6-9 months, but he takes it like a champ and nothing a bit of Tylenol can’t help. It did hurt when the tube was originally surgically placed, and he spent about a week in the hospital.
It also doesn’t seem to hurt him when he’s rolling around and gets to the end of his line. He just grabs the bag and pulls on his line to bring the pump and bag with him. It’s quite comical.
We hope you’ve learned a thing or two about feeding tubes this FTAW!
