We replace an old feeding tube part with a ‘lifetime supply’ of new parts

You don’t know what you don’t know.

Sometimes I feel like we are flying blind. Maybe we are. Maybe because we live in a rural area and don’t have access to an ALS clinic, we are just figuring things out as we go.

When my husband, Todd, was diagnosed with ALS in 2010, we monitored his lung function to make sure that he got a percutaneous endoscopic gastrostomy feeding (PEG) tube before his breathing became too weak to survive the surgery. That day came in August 2019.

At the time, Todd didn’t need to use the PEG tube for nutrition because he was still eating by mouth, and almost seven years later, he’s still eating his meals by mouth. We did, however, begin using it for medication and vitamins when swallowing pills became difficult, and I‘ve occasionally poured Ensure down his tube when he’s been sick and did not have an appetite, but other than that, I just clean and dress the stoma daily.

I clean around the wound with a damp washcloth, apply nonadhesive bandages around the tube, and wrap it in a clean cloth pouch I make out of old T-shirts. The pouch keeps the tube from catching on anything when he’s turned at night.

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Ordering a replacement part

I’ve heard that many people switch to a lower profile MIC-KEY tube, but the surgeon who inserted Todd’s PEG said, “If it ain’t broke, don’t fix it,” and Todd doesn’t mind the bulge on the front of his shirt. I figured we’d worry about it when the PEG tube needed to be replaced.

We did find it troublesome that after a year, the port at the end of the tube became discolored and I couldn’t get it to look clean, but in life with ALS, that was not our biggest problem. We thought Todd’s death was imminent anyway.

Todd held on, and somehow the PEG tube from 2019 is still in great shape, except for discoloration on the feeding tube adapter. And then, last week, the tube clamp broke.

The next day, Todd had a retired nurse caring for him, and when she was pouring his meds down his tube, she mentioned that the clamp and port are replaceable.

Todd had the caregiver take a picture of it, and then used Google Lens to tell him where he could order a replacement. He found it on the website of a medical supply company he’s ordered from before and ordered a single AMT Y-port feeding adapter for $25.

The package came within a few days. I opened it up and read the directions: “The attachment into the tube should be accomplished by a slight twisting action with a slight pushing pressure. The adapter should be completely inserted to assure a secure fit.”

I pulled the old parts off and put the new parts on. It took about 45 seconds. Easy-peasy. Then I read more of the package insert. The section on device longevity suggested the adapter could be replaced every two weeks. Another note suggested removing it for cleaning. Nobody told us the adapter could come off so easily for cleaning, and I never thought to ask about replacing it!

“Maybe I should order them in bulk,” Todd said. “But if we are replacing it every seven years, I probably already have a lifetime supply.”

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