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Feeding with a G-tube There are several methods of feeding. Drip feeding is where you let liquid food drip in or be pumped in from a bag. This allows the food to go in at a slow, controlled rate. Bolus feeding is where you use a syringe to push in a large amount of food at on time. Gravity feeding is where a large amount of food is allowed to run in through a syringe or bag at a rate determined by gravity. Sometimes this is also called bolus feeding. Following surgery, the doctor or nurse may want to put you on drip feeding for a couple of days to let your body adjust, but many people can tolerate bolus feeding from the start. There are many types of food. You can continue to eat and drink by mouth anything that doesn't cause choking. You can puree food that the rest of the family eats and put it through the tube, but it has to be pureed pretty finely. This is cheaper than using liquid food you buy at a store. There are many brands of prepared liquid food that you can buy. Some have extra calories, some have added fiber. These liquid foods are very rich and may cause digestive problems. The most common problems are nausea/vomiting, diarrhea, and constipation. The nausea/vomiting or diarrhea may come on within minutes of feeding. Either may be the result of the food being rich. The nausea/vomiting may be a result of putting in too much food at one time bolus. The diarrhea or constipation may hit in a day or two. For nausea/vomiting, it's best to cut back the volume given until you can hold it, and gradually increase. The best way to avoid it is to start with small amounts in the first place. Start with half a can, wait a few minutes, give another half can, etc. Another solution is to go to drip feeding for a couple of days to allow your body to adjust. I heard of one PALS who routinely took 4 cans (32 oz.) at a time. All three problems may go away in a few days as your body adjusts to the food. If not, it may be that that brand doesn't work for you, and you have to try a different brand. Any pharmacist should have a list of brands. It may take a lot of trial and error, but you will find a routine in time: which brand, how much to give with each feeding, what times of day. It's best to work with your doctor, nurse, or nutritionist, to find out what works for you. If you change brands, you may trigger these problems again. Your body may adjust in a few days. If not, move to another brand. You need to keep up your total fluid intake in addition to the food. Putting cold food or water into your stomach may cause cramping. Once you're settled on a brand, a pharmacist can order food by the case (24 cans) and you might work out a deal for a quantity discount. As far as I know, all brands come in 8 oz. cans You can put meds through the feeding tube. Talk to your nurse or pharmacist about pill crushers. Or you can get a mortar and pestel at a kitchen supply store. Ask your pharmacist which of your pills can be crushed; time release meds can't. Some time release meds, such as Prilosec, have small pellets in a capsule. The pellets tend to bunch up and clog the tube. You can prevent this by mixing the pellets with some applesauce, pudding, or thickened juice and pushing the mixture through the tube with a syringe.
God bless you on your journey, Wayne S. Phillips Feeding Tubes: Daily use and schedule We wanted to know what the daily use of the G-tube would be like in advance, but no one could tell us. It's impossible to predict because so much depends on the PALS' circumstances. The visiting nurse initially told us to pump food in bed from 8pm to 8am. This wouldn't work for me because I didn't go to bed that early and got up at 4:30am 3 days a week to commute to work. I had been drinking 2 8 oz. cans of Ensure (or was it Equate?) for lunch for a while, so we added a gravity feeding of another can for breakfast and dinner. (I can get along on 4 cans of 360 calories each. You may not be able to. I heard of one PALS who took 10 cans/day!) I also got extra water with my morning and evening meds. When I could no longer suck the thick liquid through the straw I switched to feeding at night. It helped to have my schedule changed as well so I always got up at 6:30am. I found that strawberry flavored food caused me some breathing problems. This was before I was on the vent. I also found later that daytime feeding with any flavor caused breathing problems. No one could really explain this. Doctors and nurses suggested that the volume of food in my stomach from gravity feeding caused the problem, but it didn't happen with the same volume of water, and it did happen about an hour after starting drip feeding. Soon I was using a BiPAP at night and doing my feeding at night too, which solved several problems. I pumped 4 cans of food 4 nights each week and 3 cans of food plus one can of water 3 nights. I always had the food stop about 5:30am so it would have some time to digest before taking the BiPAP off at 6:30. This kept me from having breathing problems when I woke up. I would set the rate anywhere from 125 ml/hr to 165 ml/hr depending on when I went to bed so it would quit at about 5:30. This meant that my wife had to get up to turn the pump alarm off. After several months of this friends volunteered to spend several nights each week with me so my wife could get a full nights' sleep. One strange effect is that I got very hot at night about 3 hours after starting my food and had to have my blankets removed. I found that chocolate flavored food kept me awake at night. I would bolus or pump water during the day to get the rest of my fluids. I continue this same basic routine in the hospital. We always flush the tube with some water after using it to make sure it's not plugged. If it does get plugged we use the syringe to pull some stomach contents out which usually clears the plug. Some tubes have a one way valve which makes this impossible. Flushing the tube with a cola drink from time to time helps prevent plugs. I have two "extensions" for my Mic-Key tube. One is a small diameter one with a right angle at the attachment point so it lays flat. I use it for food and water which pump in over several hours. The other tube is larger in diameter and straight. I use it in combination with the barrel of a 60 cc syringe for meds and to let air out of my stomach. The manufacturer refers to these extensions as "continual feeding" and "bolus" extensions respectively. At home we rinsed the syringe and tubes after each use and washed each day.
God bless you on your journey, Wayne S. Phillips Feeding Tubes: Equipment needs Here is the equipment I need for use and care of my G-tube.
We kept a spare G-tube kit at home because my wife could change it without help. We kept the spare kit and extensions because we never knew when we might have a problem. We used the extensions for about a month. After that they get stiff. We could use the syringes for at least two weeks. Washing them with soap makes the plunger tend to stick. We fixed this by putting a little vegetable oil on the rubber part of the plunger. In the hospital my syringe is replaced each day. The pump I had at home was a Kangaroo brand pump which worked well. It was rented from a medical supply company which did maintenance. We used each feeding bag for three days. We rinsed them with hot water after each use and let them drip dry. You may need to keep split 4x4 inch gauze pads on hand to put around the tube if you have a lot of leakage.
God bless you on your journey, Wayne S. Phillips Feeding Tubes: Mark and Susan We have kind of grown into everything so the changes occurred gradually, but at times, were fairly stressful. From '85 - '86, Mark's mom cared for him for about four hours a day (10 - 2 pm) He was on his own after I left at 7:55 am and until I came home at 4 pm each day. During the summer of '86 I realized that he couldn't be home alone anymore. His speech had deteriorated, and he needed assistance for eating, drinking, and other personal cares. We found a nurse (LPN) that wanted to work as self-employed. Later on we were made to go through an nursing agency. The school year of '86 - '87 was a very difficult time. I was literally at school or at home in a tiny handicapped accessible one bedroom apartment. I couldn't even get out to get groceries and it took hours to feed Mark and bathe him in the evening, as well as get school work done. At that time I found an LPN who offered to work 2 evenings a week for 4 hours so I could grocery shop or just get out to a movie or to shop. That LPN had family members who were also LPN's and one started helping me on M, W, & F's after school with Mark's bath. Daring this time Mark had lost so much weight and was having such a difficult time swallowing that the doctor recommended a feeding tube. Mark had this done in '87. We gave him liquid nutrition through the tube and he could still eat whatever he felt like eating and drinking. My doctor suggested that I puree food and force it through the tube. I told him he was crazy and that I didn't have time to prepare and force food through a syringe every meal. We compromised on a gravity bottle that we filled with liquid nutrients (such as Osmolite, Ensure, etc.) and let it drip into him through his tube. A nutritionist can help you choose the proper vitamins and etc. to supplement his diet. This drastically cut down on feeding time because it was hands off. We did not use a feeding pump. Really a waste of money, time, and maintenance. By the way, I learned how to use a Foley catheter for when the feeding tube falls out and I learned how to put in new ones, myself, at home, to save lots of time and money. It's really very easy. We change the gastro dressing once a day which takes about 5 minutes. He has regulated his eating to 3 times a day and a 1/2 a bottle of water after one of his meals. He takes 1000ml of fluid in about 45 minutes. All I do is set it up, rinse the bag out after he's done, and hang up the bag for the next use. He really struggled physically during this time. He really didn't gain back any weight after the stomach tube was placed. Now I know that his body was working so hard to breathe that his digestive system was screwed up. He was on different medications to help aid in digestion. He experienced a lot of nausea, especially during the night when he was lying down. 18 months later in '88, Mark started having respiratory crises. He would struggle to breathe and the week prior to placing the trach I actually did some nasal suctioning down into his lungs (no fun). The doctor kept track of Mark's oxygen saturation levels and finally determined that it was time for Mark to be evaluated for the trach. Mark and Susan
Read their experience getting a trach:
Mark and Susan on the trach page. Feeding Tubes: Chris' Dad My Dad passed away after a 3 year battle with ALS, and I took away a few lessons learned that I feel I should pass on to everyone. A PEG or feeding tube should be in place long before feeding becomes at all difficult. No downside to this. You can still eat if able, but any procedure no matter how slight is a shock to the body, to some degree, and should be attempted when you are strong enough to shrug it off. Once you decide to do it, don't delay. Again no downside to having one and you only have to use it when the time comes. We delayed having it done with my Dad and it would have kept him more nourished and therefore stronger, longer. Once the weakening and weight loss begins in earnest it is difficult to get back on the right side of the power curve. My prayers are with all of you with ALS and your families. Christopher
Read his comments on his dad's BiPAP: Chris'
Dad on the BiPAP page. |