I saw the other day that it was recently “Feeding Tube Awareness Week.” I’m not exactly sure why such a thing is necessary, much less an entire week. It seems like nowadays there’s a day or week for everything under the sun, including International Everything Under The Sun Day!
…okay, so maybe I made that one up.
I don’t really talk too often about having a feeding tube. You might not have even known that I have one! It’s not that I’m embarrassed about having one—to be honest, it’s not really that big of a deal for me anymore—it’s just not that interesting of a conversation topic. Sure, it sucks not being able to eat a cheeseburger, or BBQ, or Chick-fil-a—they’ll have that in heaven though—or pretty much anything except a few certain cookies dipped in coffee, but as I’ll talk about later, it’s a lot better than the alternative.
That said, I thought now might be a good time to share with you some fun facts about feeding tubes. Sound good? If not, too bad you’re getting them anyway.
5 Fun Feeding Tube Facts
1. I’m now the ultimate multitasker. I’ve always been good at multitasking, having the ability to doodle and listen in class, or watch basketball on my iPad and watch NCIS on the TV… I know, skill. But now that I have a feeding tube, I can eat while I sleep. Yes, I know, you’re jealous.
How do I do this? Well, I first lay a cheeseburger on my stomach. Then I go into a deep meditative state where I slowly absorb the cheeseburger through osmosis… okay, yes. I made that up too. But you have to admit, that would be pretty cool!
In all seriousness, my diet consists mainly of this stuff called Vivonex. It’s basically all of the essential amino acids, proteins, vitamins, and nutrients that your body needs to survive made into a white powdery substance… no, not cocaine. I think?
So, you mix that with water—the Vivonex, not cocaine—and then pour it into a bag which attaches to a small pump. The bag has a long, narrow tube that attaches to my feeding tube. Then, you set the pump to the amount you want it to pump per hour and, as Emeril says, “BAM!” You now have the ability to eat while you sleep.
2. CAFFEINE! Had a long night and can’t seem to even make it out of the bed to get to the coffee maker? No worries, mate! (Man, I wish I was Australian!… or at least had an Australian accent.) Just fill a syringe with your desired amount of the coffee of your choice and strength—cooled as to not melt the tube inside your body—and push that beautiful bean juice right into your tube and stomach! Drinking your coffee is so 2019!
I suppose this could also be done with other mind and mood altering beverages but, alas, I haven’t tried that yet.
3. You know all those juices that everyone drinks nowadays? They say they don’t taste “that bad,” but they never will say that it tastes good either. Makes me think it probably really tastes like dirt with a nice grassy finish. But I wouldn’t know because I just dispense with the hassle, bypass my mouth, and send it right to my stomach for all the benefits. Take that, ya juice cleansing hippies!
4. No one likes medicine… unless you’re my 3 cousins who think it tastes like candy… weirdos! Me, I hated it! As a kid, I’d start gagging just at the sight of it. I still don’t like grape flavored things because it all reminds me of medicine. I even preferred to go to the hospital and get an IV with the antibiotics I needed rather than have to take medicine orally… I know, crazy. Now though, when I’m sick—which luckily, hasn’t been very often—you can pump me full of all the medicine in the world without me even blinking an eye. Just measure it out, put it in my tube, and I’m done. No taste. No gagging. No IV’s.
5. I’m ALIVE! It’d be kind of hard to write this article if I wasn’t. Seriously though, I wouldn’t be alive today if it weren’t for having a feeding tube.
I fought the need to get one for longer than I should have. I began to have trouble swallowing near the end of high school—about 10 years ago. At first it was just a little bit more difficult with certain foods or textures of food. So, like with everything, I adjusted and continued on. As is the story with SMA however, over time increasingly more foods became increasingly more difficult to eat. Instead of just taking longer to eat, now food was starting to get stuck on its way down. I went through a time where as soon as I was finished eating, I had to have my mom get me out of my wheelchair, lay me on my bed, and hold my legs and feet up over my head so that I could slowly work up and out the small pieces of food that had gotten stuck. You’d think at this point I’d wise up and get the d@*# feeding tube… but you clearly don’t know me. I was determined not to lose the ability to do one more thing!
Over that period of time though—because of both the general progression of SMA and not being able to eat enough to sustain my body—I lost weight that I didn’t have to lose and more abilities I’d been just as determined not to. Using my laptop, riding in the car, getting out of the house, and just getting up into my wheelchair all became increasingly difficult and for some, eventually no longer possible.
Eventually, despite my best efforts to ignore it and push through it, it finally became clear to me—though, it had been clear to everyone else for quite some time—that I had two choices. Either continue “eating,” and also continue getting weaker and weaker until the point where either someone else would have to make the decision to give me a feeding tube, or the worst would happen. Or I could get over the fact that I was losing the ability to eat, and realize that by getting a feeding tube I would be gaining the ability to do something else, something much more important… live!
Spoiler alert, I chose the latter.
Thinking back now, God definitely made everything align when I finally decided to go and have the surgery to place the feeding tube. A friend who was a nurse called the hospital before we went and, for lack of better phrasing, basically made us a reservation. It was almost like checking into a hotel when we got there… a hotel that you really don’t want to be at, but… we were met with a “yep, we’re ready for you.” And for further confirmation, the nurse who initially took all my vitals, gave me an IV, and got me “settled in”—as much as you can be settled in in a hospital… hint, it’s not much—was the wife of a friend from our church.
It wasn’t until the next day or two that the surgery actually took place. I don’t remember when exactly, time has a weird way of blurring together in hospitals. I do know however, that it was during March Madness because, after mentioning that I hoped that I’d be out of surgery in time to see the UVA game, I awoke in recovery to a nurse saying, “you doing okay, Andrew? There’s no TV in here, but I can put the basketball game on this computer if you want?” Even in the fog of anesthesia, that’s an easy question.
Having a feeding tube took some getting used to. It was pretty uncomfortable to begin with, and it can still be at times. Becoming educated about them and the care that they require—though minimal—was more difficult than it should’ve been. You’d think that when you get something like that, a feeding tube, that the hospital would tell you everything you need to know about how to care for it… you’d be wrong. If it weren’t for Facebook and some close friends we might still be finding our way today. Who knew you have to change them every 4ish months?! We didn’t!… until my tube fell out in my mom’s hand that is. Another story for another time, though.
A doctor said something to me once that really stuck with me. She said, we don’t realize how much food, and sharing a meal is ingrained in our social society, and it’s difficult when that commonality is gone. She was right. We really don’t realize just how much food is a part of our culture. When that ability first started to be taken away, I resisted it with everything I had, and I suffered the consequences of it. But after realizing that, of course, it was firstly more important to actually be around. And after I got the feeding tube, I found out that even though I missed the commonality of enjoying food together—and, you know, the taste of delicious smoked meat—it’s really the time and conversation during that time that was most important anyway.
So, there you have it, five fun feeding tube facts. I admit, some of them are a bit silly—or a lot silly—but sometimes, when something comes along that’s scary, or frustrating, or just sucks, what it really needs is a good dose of sarcasm, self deprecating humor, and laughter. It’s a lot better than the alternative, that’s for sure.
Well, those are my remARCs. I hope they in some way, big or small, might have resonated with you. Whether it made you laugh, cry (I hope not too much), smile, or maybe think about life from a different perspective, I hope you take something away from this article that makes your day even the slightest bit better. I’d love to hear your remARCs as well. Feel free to send me an email at firstname.lastname@example.org, or leave a comment on the My RemARCs Facebook, Twitter, or Instagram pages… unless you hated it. In which case, why are you even still reading this? Hope to see you back here soon. Until then, be well and live remARCably.