CAREGIVING: I’ve wanted to do a post about stomach tube feeding for quite a while. It is one of those topics that some of us have strong opinions about: pro and con. Most studies say that tube feeding does not prolong life or eliminate the possibility of aspiration pneumonia. And eating food is one of those activities that we all enjoy. So this post is about how Kathy came to use one, but other people with Huntington’s Disease decide against it.
Kathy’s problems with swallowing food got worse in April. I was already feeding her by hand. I was pureeing her food and adding a thickener to her liquids. When Erica, the speech pathologist evaluated her she discussed using a PEG tube. PEG stands for Percutaneous Endoscopic Gastronomy. She stressed that it was a personal choice but that the time had come where Kathy was not getting enough nutrition to survive. Each bite of food was taking four or five attempted swallows to get it down. She seemed to cough or choking on her food and drink. But the thought of never eating food was too much for Kathy at that point. I kept on trying to feed her tiny bites with one hand and my fingers crossed in the other. She developed pneumonia by Memorial Day and was rushed to the hospital.
Aspiration pneumonia is one of the most common causes of death in Huntington’s Disease. All those muscles and nerves in the mouth and jaw and esophagus have to be working like a fine watch. When the coordination is off food and saliva goes into the lungs. If the patient has lost the ability to cough it gets even more difficult. While Kathy was in the hospital gasping for air I asked her if she was afraid. She nodded “yes”. I asked, “Afraid to die?” She shook her head. I said “Do you think you want to try the feeding tube?” She whispered, “OK.” This was a change from the Five Wishes advanced directive she had filled out a few years ago. We’ve all had a sip of water or a piece of food that has gone down the wrong way. I didn’t want to give her a painful death by choking. This is just how we handled it and the choice that we made.
I have managed the tube feedings for a few months and I seem to be getting the hang of it (that’s an intravenous pun). Until we started the PEG feeding I didn’t realize just how stressful preparing food and feeding Kathy had been. I was always afraid I would be calling 911. Or if I fed her too quickly I would kill her by causing her to choke. So in some ways it is easier on both of us. Since I administer her meds into the tube, I don’t have to worry about her choking on pills either. It still takes care and management though. Stuff still happens. More about that later.
The tube itself was inserted while she was still in the hospital. The procedure was performed by an “interventional radiologists.” I had no clue what that specialty was before this, but if you think of some minimally invasive procedures – like stents or heart catheters – they are the ones who do it. They gave her barium and a series of x-rays to make sure that when they went through to the stomach they did not hit anything else. They gradually increased the feeding rate with a little pump while she was still there. There are some earlier posts about the hospital part and when she first came home. The guy who delivered the pump and the first batch of supplies arrived late but we got up and running with the help of the VNA. Kathy is on continuous feeding. That means that the nutritional formula is delivered slowly all the time. The theory is that there is less chance of her having reflux and aspirating the food and getting pneumonia anyway. We always keep Kathy’s head elevated at least 30° again to keep the food and liquids in her stomach. The only time I let her nearly flat is when I change her.
The basic equipment is a vinyl bag that gets filled with a high nutrition formula. It has everything the body needs apparently. Except taste. The tubing runs through a little pump called the Kangaroo, that is clamped on to an IV stand. You need to use a new bag after 24 hours because the food isn’t refrigerated. (That’s all I need is for Kathy to get the runs.) From the pump the tubing is connected to the patient’s PEG tube sticking out of the belly. During a 24 hour period she gets 5 1/2 containers of the formula. There were some adjustments that had to be made. Under the original order I was supposed to give her 6 containers a day. Three in the morning and another three 12 hours later. The only problem was that sometimes the next refill was at 4am. a nutritionist from Coram, the feeding company called to see how I was doing. She changed the feeding to a slightly faster rate and told me to use 2 1/2 boxes in the daytime and to put the other three in before I go to bed. That has worked out better.
The pump has a rechargeable battery so I can roll the set-up with us if I move her to the kitchen. The stand is a flimsy thing. The original delivery guy over tightened the pump clamp enough to crush the aluminum pipe. It was barely hanging on to it. I was able to slide the pump down a few inches so it looks straight again. The actual tube area is where I have had many problems: some because of the stupid design and some because of my own mistakes. Kathy’s shaking has disconnected it a few times, too. The tubing from the pump usually attaches to a thing called a Lopez valve. I looks like a tiny faucet or gas shut-off and like the rest of it is held in place by friction. Sometimes it stays. Sometimes not. One of the nurses told me to try eliminating the valve. The more connections, the more chances to screw up. I have turned the pump on but forgotten to turn the valve on. That forces the valve to disconnect and pump food all over Kathy. So I have been experimenting with leaving it off.
For the most part the purple end from the feeding bag fits into the stomach tube better. But the other day I ended up with a mess when they disconnected. My new method is to take a velcro cable tie and pull the two parts together. It seems to be holding well at the moment.
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