It’s Feeding Tube Awareness Week. When I first heard of it, I didn’t know what kind of awareness I was supposed to spread- is there anyone out there who is afraid of feeding tubes? Are there still people who are ignorant of them? I suppose there must be; I’d never heard of them until 10 years ago. Before then, if you’d have told me someone needed a feeding tube to stay alive, I would’ve assumed the person was old, dying, and had some large tube shoved down their throat to force feed them hospital gruel. Obviously, feeding tubes were only something needed by really sick people who probably had an awful quality of life. Don’t ever give me one! I’d rather die than not be able to eat!!!
If you find yourself reflexively thinking this way (like me for the first 30+ years of my life), let me make you more aware about what a feeding tube means to our family and how it has literally saved my sons life and continues to allow him to be the crazy, fun kid he is. (Hopefully this is the point of Feeding Tube Awareness week and not to raise money to kill wild tubes that roam the streets at night feeding on children. That would be a topic for another post.)
In the spring of 2011, Fulton got a cold which ultimately became pneumonia. His condition necessitated our first long hospital stay and introduced us to a bunch of new medical interventions, including the nasogastric (NG) tube. Because of fatigue and an increased overall weakness due to the stress of his cold, Fulton started aspirating thin liquids, meaning things that should’ve traveled down his throat into his stomach, were making their way into his lungs. We had to stop giving him thin liquids via his mouth, and instead put everything through the thin tube that now ran up his nose and down the back of his throat.
Once he was recovered, he could eat some foods by mouth, but anything like milk or juice, had to be thickened and foods that melted, like ice cream, or “mixed consistency” (liquids and solids) like chicken noodle soup, were forbidden. Fulton hated the taste of thickened liquids and shortly after getting the NG-tube, he stopped drinking by mouth. Even after a swallow study showed he was no longer aspirating thin liquids, he didn’t want to drink as much fluid as his body needed. We’d hoped to be done with the NG-tube at this point, but the side effects of him not drinking enough (ie constipation) meant we kept the tube in far longer than expected. Plus, Fulton had always been on the low end of the growth curve. He struggled to gain weight. Once we had the NG-tube in place, it became an easy way to give him more calories as well.
Although we were happy the NG-tube provided Fulton with all the fluid he needed, and some much needed nourishment, there were many parts of it that were uncomfortable for him. The NG-tube is attached to the cheek by means of several layers of tape and a protective barrier cream. Because it is visible on the face, it immediately drew stares. It was also not uncommon for the tube to get accidentally pulled out part way, which was painful and uncomfortable, and required us to remove the entire tube and reinsert it. Sticking a tube up your child’s nose and down their throat is just as fun as you can imagine for all parties involved. It was easier for us because Fulton’s weakness and limited range of motion meant he couldn’t fight us when we had to reinsert it, and it wasn’t easy for him to pull the tube out himself. (This video explains the whole process.) And despite all the protective layers his skin would get irritated and red at times. Now that he’s older, Fulton can better articulate how the NG-tube felt and he remembers it being uncomfortable and generally disliking it. Plus he had a fear of it accidentally getting pulled out.
The alternative would be a gastrostomy (G) tube. A somewhat permanant port directly into his stomach placed during surgery. It sounded scary and I felt it would reflect poorly on me: that his need for a G-tube was due to my failings as his mother, and not his underlying condition. If I just worked hard enough, I could get him to consume all his nutritional needs by mouth. When I showed up at one of his medical appointments months later, the doctor asked why he still had an NG-tube? Wasn’t his hospitalization with pneumonia more than six months ago? Didn’t the most recent swallow study show he was no longer aspirating thin liquids? When I voiced my concerns about his ongoing low fluid and caloric intake, and asked if it necessitated a G-tube, she informed me that yes, Fulton needed to continue with tube feedings, and that he was long overdo for a G-tube.
Over the next few months we would schedule, and reschedule, Fulton’s surgery numerious times due to illness. Finally in June 2012 his G-tube was placed. I’d built it up into this big thing, but the surgery itself was super fast, and he had no problems. (To understand the medical details of how a G-tube is placed, I recommend this video.) Over the next 48 hours in the hospital, we learned how to hook up his feeding eqipment to the new tube (called a button) and he was monitored to make sure everything was working.
In addition to the tube itself, there are extenstions which connect the tube to either a feeding bag or syringe. Feeds can be given with the help of a pump, which pumps a set amount of food into the stomach at a set rate, or a syringe which allows the food to flow in quickly using either gravity (plunger removed) or by depressing the plunger. The G-tube button itself needs to be changed every couple months. Because the site around the tube has healed up (sort of like when your ear heals after getting it pierced), the button can be changed at home, and it’s something I now do myself.
Having a G-tube has been a life saver. I wish we would’ve gotten it sooner. It’s so much less stressful to have the tube in place and be able to make sure he’s properly nourished, vs constantly trying to get him to eat and drink enough by mouth. And for the times when he’s been sick (or especially during his back surgery recovery), it’s sometimes the only nourishment he gets. It’s comforting to know that even when he’s struggling in one sense, he’s not also hungry or thirsty; his body is getting the fuel it needs to get better. He has no fat reserves so anytime he goes without food, it can get serious pretty quick. The G-tube has prevented so many crisis. And of course even when he’s not sick, it keeps him happy and healthy and feeling better. It’s also great for giving medicine, since any liquid is shot into his stomach directly- no complaints about taste! Unlike the NG-tube, the G-tube doesn’t bother Fulton, although there have been a few times in the past when the skin around the button got red, sore, and/or itchy. He doesn’t like getting it changed, although it’s a painless procedure.
Some of the downsides include storing the supplies, making sure enough supplies arrive on time without insurance or vendor issues. The pump can sometimes jam causing it to alarm in the middle of the night, or in the van, or any number of inconvenient locations. Sometimes the extension, or part of the bag will come loose and water or formula will spill onto the floor, wheelchair or bed, sometimes for hours, before we catch the leak. It took us a little while to find the perfect formula and feeding schedule for Fulton. It can be frustrating if your child isn’t tolerating the formula you’re giving him, or if their feeding schedule leaves them with no appetite for meals. Right now we have a good balance. Fulton has a good appetite for three meals a day, and we give him several feeds that keep him hydrated and properly nourished. If he stops eating at meal times, or exhibits new symptoms (losing weight or not gaining, or dehydration) it’s time to reevaluate.
Because Fulton is physically disabled and in a wheelchair, people already stare at him and make assumptions about his quality of life. I’m not sure that having a feeding pump on his chair, or his need for tube feeds really adds any more pity to what some people feel towards him. Other kids will ask about it but our expeirence in this regard is different vs kids and adults with no other visible disablity who require tube feeding, and maybe don’t eat by mouth. I think there can be more challenges with fitting into a typical classroom and managing peer interactions but we don’t have experience in this regard (maybe readers who fit in this category can share in the comments below).
In a short time I went from viewing feeding tubes as a last ditch effort to save someone from the brink of death, to realizing they simply help people who can’t take in enough calories by mouth live a more typical life with less worry and stress. Some people outgrow their feeding tubes, and some require for life. It’s not the way most people eat, but it’s not a bad way to live. People like Fulton are living good lives with the help of a feeding tube, not in spite of it. Our experience has been overwhelmingly positive. Other parents are welcome to share their experiences in the comments below. Every family’s story is different
Okay, so that got really long! Sorry about all that awareness! If I didn’t answer your question, you can leave it below and I’ll update the post as necessary. You can also link up your shorter Quick Takes filled with less awareness below. Be sure to include a link back to this post so your readers can find the rest of the Quick Takes. I look forward to reading your posts!
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I didn’t even know this week existed!
I can definitely say that Daniel didn’t choose the g-tube life. The g-tube life chose him!
HA! I like that! The G-tube life definitely chooses you not the other way around!
I don’t have a kid with a feeding tube, but I’ve met lots and lots of them who do growing up and over the years. Most of them weren’t wheelchair bound, and they looked very inconvenient when the kid wanted to get wet or go swimming, but other than that I don’t recall any stigma to them other than “what’s that?” when I was younger.
I’m not sure what type of tube feeding set up the children you saw had, but Futon has no trouble going swimming. Without an extension connected to his button, food and water can’t get into his tube/ stomach, and stomach contents can’t get out. There was a period of time right after his tube surgery where (I think?) he couldn’t swim, but his tube was placed in late June and we were at the beach in late July with no problems.
I’ve found that we got SUPER creative with how to swim with things attached to my person. 🙂 Lots of Saran Wrap around IV sites so they stayed dry was a favorite….the nice thing about my port is we *can* de-access it for periods of time so I could swim or take a bath or whatever.
We were *really close* to me getting a feeding tube before transplant, and I’m positive that if I had been at any other center, the doctors would’ve forced us to do it. I was doing lipids and TPN via my port on and off in the year before transplant, which weren’t super fun (especially on Christmas morning when I just wanted the d*!( thing off!) but in hindsight I see that it was definitely needed because even *with* all this, I was still 85 lbs. Lots of CF folk do have them so it’s something that I knew was possible. When I volunteered at the local Children’s Hospital’s Clubhouse (for siblings of patients) there was even a doll with a G-tube, and the kids played with it like it was no big deal. Even the tiny ones knew what it was!
Definitely the nice thing about the G-tube is it’s hidden. I’ve never had an NG tube but I’ve had a pH probe test done, and it’s inserted the same way an NG tube is. NOT FUN. Or nice for your face!
My son’s (now former) gastroenterologist thought it would be a great idea to put an NG tube in my severely autistic son before his g-tube surgery to nourish him despite 10 people telling her it was a horrible idea. Cue my kiddo projectile-vomiting on the nurses while they tried putting it in and then vomiting it out 90 minutes later. They had to steri-strip it to his face and put mittens on his hands to keep him from pulling it out… and he still managed to get the steri-strips part of the way off.
God bless the nurses at Seattle Children’s because they refused to put it back in, After watching me get milk and cheese into him over a day and a half, his attending physician (who was NOT his former gastroenterologist) came to me and told me that they were discharging him until surgery because I was doing a better job of nourishing him than they could.
His former gastroenterologist, to her credit, did apologize to me.
I feel like “I didn’t choose the G-tube life, the G-tube life chose me” needs to be either a tattoo or a meme, I can’t decide which.
I will think about that for my next tattoo…
Thank you for this! I don’t have any experience with feeding tubes and I’m so glad to learn.
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