ALS From Both Sides, ALS Patient Care
ALS From Both Sides
Care of an ALS Patient
By Diane Huberty, Retired RN, Certified Neuro Nurse
...and ALS Patient

Tubing Care

When you get the first tube and with each change, ask to keep the package the tube came in. This will help with replacement of the same type and size of tube if it should come out. Write date on the package.

When you first get a feeding tube, have one replaced, or slide the bumper back, make a note of the position of the bumper on the numbers along the tube for comparison if problems occur. Write this on the package too.

When your feeding tube is first placed or replaced or with any abdominal pain, checking to make certain that the tip is in the stomach is critical. Running tube feeding into the abdomen rather than the stomach causes severe complications. So, with the first feedings, you will be taught to check tube placement before feeding. Any pain during these checks beyond the discomfort of having the tube moved around, indicates trouble requiring a call to the doctor. The pain will be bad and there will be little doubt there is a problem.

The only better check is an X-ray. This will probably be done if when you have are having the tube replaced but certainly isn't necessary before every feeding.

How long do you have to keep doing this song and dance every time you use the feeding tube? No one will give you a straight answer to that! My best answer is until you have done it enough times without any sign of trouble that you are comfortable skipping it. Or when you are just tired of doing it over and over. If you have home nursing care, be prepared for this ritual to go on forever. Most nurses are taught feeding tube care based on the nasogastric (through the nose and down to the stomach) type of feeding tubes that are far more common in hospitals than feeding tubes. Nasogastric tubes can easily be tugged up out of the stomach by a patient or even cough/gagged upward. If that happens there is a real risk that a feeding will end up in the lungs. Bad thing. So, nurses with hospital experience have the need for ongoing tube placement checks burned into their brains and this may follow them into home care even though feeding tubes aren't as problem prone as nasogastric tubes. Once in, a feeding tube isn't going to go anywhere unless it is pulled hard. If that should happen, of course, you will want to check placement before using it again.

The Number One rule for caring for a feeding tube is to flush it with at least two ounces (60 cc's) of water every time you use it and once a day if you are not using it. Unless you do that religiously, even fanatically, the tube is going to get plugged up. To flush the tube, use the 60 cc syringe as a funnel. Don't use the plunger to push the water through, allow it to flow in by gravity. You will quickly become accustomed to the speed at which the water will flow in and can tell if the tube is gradually clogging up.

A plugged tube may have to be replaced, but usually can be unplugged if attended to promptly. If you are having problems with a newly placed tube, it probably isn't simply clogged if you have been flushing it well. This situation requires a call to the doctor. However, in a tube that has been working well, check the markings on the tube to make sure it is still in the stomach. If that checks out, try these steps:

Positioning a feeding tube in any particular direction, if at all, is a matter of choice. The lump under your shirt is certainly more apparent to you than to anyone else, but most of us feel the need to minimize it. There are tube holders you can buy but you can make one from a strip of soft fabric and Velcro. A length of Ace stretch bandage like you use for a sprained ankle works well. Taping the tube in place is not comfortable, and replacing the tape daily causes tape burns. Whichever way you do it, put a Kleenex between the tube and your skin. Maybe it is just me, but the ports on the end of the tube sometimes give me a blister.

mic-key%20buttonIf the look of the tube really bothers you, a button feeding tube can be put in at a tube change. This tube is capped at the stoma, eliminating the dangling length of tubing. The price you pay for this little vanity is that using the tube requires attaching a short length of tubing which adds steps to the feeding process, but may be worth the trouble in trade for restoring your self-image.

You may see a build up of black stuff in the tube. This is yeast, which finds the warm, wet interior of the tube to be yeast heaven. As nasty as it sounds and looks, yeast growth is harmless. Any of it that gets washed into your stomach is quickly killed by stomach enzymes and acids. Regularly cleaning your tube with pipe cleaners or feeding tube brushes keeps it from looking really bad, but the best they can do is remove some of it. Even if you were able to get the tube looking spotless again, studies have shown that yeast embeds itself invisibly in the tubing material and quickly re-grows.

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