Feeding Tube Awareness Week: Independence

On this last day of Feeding Tube Awareness Week 2022, I was really stumped about what would be interesting to share. It wasn't that I lacked ideas, it was that I had too many ideas for what *I* find very interesting about tube feeding.

What to Discuss? Independence in Feeding Tube Management

There are so many formulations of food, very precisely designed for different digestive problems in the body. In recent years, parents have even begun blenderizing* their own foods for their tube-fed children. Because of popular demand, now companies like Nestle are making blenderized* foods for sale, like the one Thomas uses, whose ingredients are simply chicken, various vegetables and fruits, plus olive oil. (The English major and professional editor in me asks WHY, WHY?! the industry uses the verb "blenderize" and adjective "blenderized." Why don't we just blend the food? Isn't it simply blended food?)

The rate of tube feed varies widely. During all the months in the hospital, Thomas's body could handle only 5, 10, 15 mL per hour, but now he can handle 100 mL/hour 😊 20 teaspoons = 4/10 of one cup of food). In the best circumstances (which Thomas will never reach), people can have a much faster tube rate, even a bolus feed (200–400 ml of feed over 15–60 minutes).

It is interesting to discuss how to do tube feeding when out and about (putting a pump in a backpack).

One could discuss protocol about when a tube gets pulled out of the body.

I could even share the history of the invention of the percutaneous feeding tube (direct access, not an NG tube). A friend of mine reached out to me to share that their now adult-child in 1988 was one of the first children to have this procedure done on her. I looked up the history of this invention and, indeed, it was only in 1980 in the exact children's hospital where my friend's child was treated. Just think how recent that was and how many children and adults alike either starved to death or suffered horribly for lack of nutrition before tube feeding was readily available!

So many ideas that I settled on discussing INDEPENDENCE! Thomas is well on his way to independence with managing his tube feed at age 6, which feels surprising to me, but maybe isn't. I've heard that kids diagnosed with Type 1 diabetes are even trained at age seven or so to start being responsible to count their own carbs.

Of course, in the hospital for four and a half months, the nurses handled his tube feeding (and TPN) until Thomas was discharged and I took over his tube feeding (and TPN!). Towards the end of his hospital stay, new nurses would often expect me to handle his tube feeding and I was so confused because I thought that was their job. However, in retrospect, I understand that they were confused because normally parents handle tube feeding: it's just food. Just like parents handle feeding food by mouth in the hospital, parents of tube-fed kids don't just stop managing that when they go in-patient: the parents keep on managing the tube feeding, and they just tell the nurses when they ran the formula, how much, and at what rate so that the nurses can log the information. Since Thomas became a tube fed child in the hospital, I had zero experience managing his own feeds, hence confusion on both my and the nurses' parts!

Over the months at home, Thomas was quietly watching me manage the settings on the pump every single day and he learned much. Slowly, he initiated wanting to do things himself and now he does much.

In the evening, I tally Thomas's daily calories to know how much formula he needs that night to reach his calorie goal. I mix his pouches of food with any additives (e.g., powdered vitamins specific for tube feeding kids experiencing malabsorption) and pour it into the bag. This would not be possible for Thomas to do yet because it is heavy and would make one heck of a mess when he would inevitably spill it.

I program the pump based on amount of fluid running over a certain number of hours and at what rate Thomas's body can handle. Any tubie parents want to share their experiences of the gradual process of an older child programming his own pump and at what age he took over? I'd love to hear it!

Thomas attaches his own extension, which is the little tube that clips into the "button" on his belly. The extension (his is about 8" long) then connects to the long tube and bag of food.

If Thomas needs to pause his tube feed and disconnect from it (say, to run to the restroom), he knows how to pause the pump and disconnect, clamping at just the right time (or intestinal contents do start to come out--ha ha! true!). If I started his pump and I failed to unclamp the tube, the alarm will sound. Thomas knows to mute the alarm, unclamp, and push "run" again.

I rise each day at 5:00 a.m. so I have a half hour to dress head to toe, plus hair and makeup, and listen to some encouraging podcasts while undisturbed. During that time, i also draw up Thomas's medications and place his charged cell phone (necessary to receive data from his Dexcom continuous glucose monitor) into his little sling backpack. I put his medications plus a water flush in a basket on the foot of his bed and I place his sling backpack containing cell phone next to it. Then I go downstairs to do a half hour of puppy, kitchen, computer chores in peace before the crew begins to rise at 6:00 a.m.

When Thomas wakes, he turns off his own feeding tube pump and disconnects himself. He carries his backpack to a little seat he likes on our bathtub where he puts in all his own medications to the 8" extension tube. Any nurse knows this requires training because one has to clamp and unclamp the tube in between each medication given. Thomas knows to do the water flush last, or medication would be sitting in his tube and not sitting in his body. (NOTE: Thomas is no longer taking any medication that is an opioid or anything that would cause withdrawal, or I would not allow him this independence.) Then Thomas removes his extension, closes his button, and leaves all the supplies in his basket for me to clean up later. He gets his own weight on the scale daily, dons his sling backpack (with cell phone), comes downstairs, and writes down his weight on my tracking sheet.

Then begins morning cartoons because he is six years old. 🙂

(This is not on the subject of tube feeding, but on the subject of independence: If Thomas feels sick during the day, he knows to check his own glucose reading on the cell phone. He doesn't have excellent understanding of what numbers mean what yet, but he does know good readings and ones that are way too high or low. Also, it took about a month of frequent reminders, but he now almost never takes off his sling backpack during the day, forgetting it around the house. The cell phone has to remain within eight feet of him to get his glucose readings, so he has learned that he simply must keep it on his person all the time.)

Thomas sporting his dinosaur-themed sling backpack

I love seeing Thomas's independence, all of which he fostered himself by insisting he try to do these tasks. The more he can own of his own health care, the better for his sense of wellbeing. 

Tube feeding may seem alarming and scary to the parent when a doctor is first proposing it, but it's just another way to eat--and it's something even a little kid can start learning to manage!