Five years ago today, my mother had a g-tube (gastric tube) inserted into her belly. The reason? She kept aspirating pills, and she got tired of going to the hospital to have them fished out of her lungs. When the doctor gave her the option of having the tube put in, she said, “Do it!”
The rest of the post might be TMI, but I know she isn’t the only one with a feeding tube, and somebody just starting the journey might stumble on this post and take heart from it. So:
She hasn’t taken anything by mouth since she got the tube, except as part of therapy designed to strengthen her swallowing response so that she could take something by mouth. But she got aspiration pneumonia from it, so that was that.
For a while, she took Jevity, and that worked for about a year. She did what they call “bolus” feeds, meaning she poured a certain amount through a big syringe into the tube six times a day. Then she stopped thriving on it. She dropped weight and was nauseous and weak.
So I started cooking and pureeing meals for her, thinning everything with cream or broth or fruit juice. That worked for a while, but it was hard to get enough calories and nutrients in a mix thin enough to go down the tube without it being too much for her belly to hold. During that time, I discovered that soy protein made her queasy. I also noted that Jevity contains soy protein.
The doctor and I agreed that she needed to go back on formula, but this time we tried Osmolite, and she’s been on that since.
There are a BUNCH of formulas, so if Osmolite hadn’t worked, we weren’t at the end of her rope.
I was losing my ever-loving mind. #1 Daughter suggested looking for an online support group, and I found Inspire. They rock!
When Mom went into the hospital with that last aspiration pneumonia, they put her on pump feeding. When she got home, she could no longer tolerate bolus feeds, so we had to get her a pump. She uses a Covidien Joey pump. We like it, because it plays a drawing of a kangaroo leaping when you turn it on.
Then she wasn’t getting enough water, so we got dual bags that dispense water and formula.
Then her electrolytes were low, so I started giving her her meds with 300 ml of electrolyte water. I make it:
Electrolyte Water a la Mom
- 1 liter tap water
- 1/2 tsp salt
- 1/2 tsp baking soda
Sometimes she forgets stuff. Sometimes she takes her food bag nozzle out of her g-tube and hangs it up on the pole without turning off the pump. The pump doesn’t know it isn’t still pumping food into her, so it keeps dispensing, and the food drips down the pole and onto the floor. So I made a collar for the pole, which I tape just below where the nozzle gets parked.
- 4 sheets of paper towel, put together and folded into thirds
- masking tape.
Wrap the paper towel around the pole, just below the place where you store the nozzle when it isn’t in use. Put strips of masking tape down the collar and onto the pole. Put one long piece of tape around the collar to hold it closed.
That catches most drips until you discover the mistake and fix it. The collar can be cut away and replaced as needed.
Oh, you know what else is fun? The people who make the g-tubes and the feeding bags have new connectors on the bags, but not on the tubes. So they have to supply adapters with every bag set. Guess what? Unscrew a couple of those adapters before you discard the bags, disinfect and clean them thoroughly, and save them. Sooner or later, you will get a bag set without an adapter, or the adapter will fall off into the garbage, and you’ll be glad of an extra. Same goes with those clear little “hats” that cover the nozzles. Save a few.
ALSO, the adapters don’t adapt very well. Mom’s nozzle was always popping out of her tube. So we tear off a few inches of Nexcare Sensitive Skin tape, fold under a bit of one end to make a handle, and wrap it around the connection. That’s an expensive product, but we use it because it sticks without leaving a sticky residue behind. Then we use an AMT clamp to make sure. Belts and suspenders? Sure, but you only need to change out one bed with the mattress soaked through to the floor and a Mom who hasn’t had any food actually go into her belly all night before you decide belts and suspenders sounds like a pretty good idea.
Well, that’s more than enough. If you or a loved one is on tube feeding, do check out Inspire. And feel free to ask me if I’ve encountered this or that problem and, if so, how we handled it.
I’m posting today at Fatal Foodies about green beans with a Russian flair.
A WRITING PROMPT BASED ON MY POST: A character figures out a way around a problem.
Dan AntionNovember 14, 2017 at 8:01am
I think it’s great when people who have been through things share little bits to help others.
Marian AllenNovember 14, 2017 at 8:12am
Yeah, like the nurse who tied a loose knot in the plug end of the pump cord so, when it was unplugged, we could hang the cord on the pump and not trip over it. Little things like that, that make life SO much easier!
Alicia Butcher EhrhardtNovember 14, 2017 at 12:29pm
I’m impressed at your problem solving – and at your mother’s matter-of-fact acceptance. A dear friend’s dad needed a feeding tube – and she insisted he get it, and yes, it sometimes had problems, but she had her dad comfortable a lot more time.
I just hope that whatever place we move to can do things like this for us if we need them, and we can afford that care.
We’re all differrent. My mother couldn’t move, but she enjoyed her food (and would not eat a mushed and liquified version a new caretaker tried to get her to eat) up until the day before she died, at 94. The little things count, and they will be different for each of us. Mother’s food had to be finely chopped, but she did NOT want her eggs and her applesauce in the same bite!
Marian AllenNovember 14, 2017 at 2:39pm
I’m with your mother about pureed or chopped food! Mom didn’t EAT hers, of course, it all went into the tube, so she didn’t care if it was all mixed together. When she pureed Grandpa’s food, she did each item separately and then heated it all in the microwave.
ROY A ACKERMAN, PhD, EANovember 15, 2017 at 12:25am
I am so sorry for your mom’s experience. Has anyone suggested a different version?
Marian AllenNovember 15, 2017 at 8:39am
A different pump/bag vendor, you mean? They haven’t. Since insurance pays for most of it, we pretty much take what they give us. I’ll talk to the Hosparus nurse about it. Thanks for jogging my brain out of its rut!
joeyNovember 15, 2017 at 9:24am
I like to read stuff like this, because I like to learn. One day, I could need some of this advice, tucked away in my brain, or maybe pass it on to someone who does. I appreciate shared resources and tips and tricks.
I wish feeding things had gone differently for my father. I blame his death on his low weight and weakness because of it. Being of sturdy stock, I had no idea just how dangerous underweight can actually be. If it hadn’t been that, it would have been something else, but it still bothers me.
Marian AllenNovember 15, 2017 at 2:44pm
My family has always been wary of underweight, making me wonder if we might have lost some from it back in the day. “You need something to be sick with,” was the saying. Meaning you needed some surplus to lose, if you were going to lose any from illness. So I suspect a hard-learned lesson produced that saying.
joeyNovember 15, 2017 at 4:25pm
I bet you’re right.