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TPALS Home Stories: Diagnosis Stopping driving Going to a wheelchair Positioning in Bed Feeding tubes Using a BiPAP Getting a trach Life on a Vent Power outages Resources: Communication Aids ALS Links.com ALS Survival Guide ALS Links More Links ALS Association MDA Misc. Issues: My Meds My Treatment Dr. Meagher & Pergonal Ron Leeb & ricin |
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Feeding Tubes: Tummy Tube Tips When I got my tummy tube the doctor said that it would have to be replaced in about a years time. It is now been in for 20 months and shows no signs of needing replacement. We suspect that this longevity may be the result of our always making sure the tube is flushed with clear water after any feeding or medication injection. The number of pills that I take each day keeps growing. At first we used a hand operated pill crusher to break the pills down to a size that would pass through the tummy tune without clogging. This worked but it was slow and not quite perfect. At the support group meeting Ken Hensel said that they used a small food processor to cut their pills down to size. We got one and this was a vast improvement over hand crushing but we continued to have problems with pills having a thin non powder coating. My daughter Sue purchased a coffee bean grinder, which is no larger than the individual food processor and this grinds all of any pill to a fine, no problem powder. Sue then obtained four plastic pill containers, with caps, and now prepares the meds for four days at a time. We purchase our vitamin E in liquid form at a local health food store. It is labeled Liqui-E, and is produced By Twin Laboratories Inc. of Ronkonkoma New York 11779 Our feeding tube nozzle has a second port that we have been told is for medication injection but we have no use for it and we tape it shut so there is no chance of it popping open during feeding. We have also found that these nozzles lose their ability to stay closed and as such we keep a replacement on hand at all times and change it at the first sign of it not wanting to stay closed.
Bob Strehlow, in SE Wis. ALS Chapter's HopeLine newsletter Feeding Tubes: Living with a G-tube Comments on previous stories The writer mentioned disliking the hard plastic doughnut they put in your mouth so you won't bite down on the endoscope. That's called a bite block and I've had many bad experiences with them. After my operation I was on a ventilator (through my mouth) for ten days. At first I had a bite block but I had so much trouble with it they had to take it out. I've had two endoscopies - one to install the peg and one to remove it. Both times I had a bite block and both times I ended up with a cut lip because of it. If I ever have to have another endoscopy, I'd ask the doctor to start the IV sedation the second the bite block goes in. Once the sedation kicks in it's alright but even a four or five second delay can mean trouble. The writer mentioned having difficulty finding consistent information on G-Tubes. We had the same problem. Everyone has a different opinion. We've pretty much figured out what's best for me by trial and error. One thing we have found is that they grossly overestimate the time you can wait before replacing a balloon-type G-Tube if it falls out. We were told a new one should be put in within six hours to prevent closure of the incision. My first balloon-type G-Tube fell out less than twenty-four hours after it was put in because the doctor mistakenly inflated the balloon with air instead of water. He came to our house to put in a new one. Probably about 90 minutes elapsed from the time the G-Tube fell out until he arrived but the opening had already begun to close. He was able to get the new one in easily enough but I never could have gone any six hours. The writer said he had minimal pain after the initial G-Tube installation. I had a lot of pain. I was in a rehab hospital at the time and the doctor did not send a pain medication order back with me. By the time the rehab hospital contacted the doctor and got a IV started, I was in agony. Talk to your doctor about pain management before the procedure and don't leave the acute care hospital without an order. Also it's usually difficult to start a IV in PALS because we don't have enough musculature to support the veins. So if you have a good line started at the acute care hospital don't let them remove it. Acute care hospital nurses usually have more experience starting a IV than do rehab hospital nurses. It took the rehab nurse thirty minutes to start the line and she wished they had left the first one in. So did I because I think hers was infiltrated a little because I didn't get much pain relief.
Meredith Feeding Tubes: Mike's experience [From email and several ALS Digest entries, edited together.] I have a neck tube. A nose tube is very irritating and not suitable for long term use. Also a doctor must insert it because of the high probability of going into the lungs. A G-tube works fine but the MDA doctor recommended a neck tube because the G-tube surgery disturbs the diaphragm and results in reduced breathing function. Not a good thing for ALS patients. Many doctors who are surprised I have a neck tube, when hearing what my doctor told me, say they have always wondered why their patients have respiratory reduction after G-tube surgery. The surgery is done on an outpatient basis and involves only a local anesthetic. I have had my tube 5 years now and there have been 0 problems. It is easy to use and I was being fed while writing this note. My neck tube was put in by a local ENT, Dr. Gordon Summers. After the stoma heals there is minimal maintenance. The tube is easily changed when needed, about every three months. You can easily do it because the stoma goes directly into the esophagus. It takes some looking to find an ENT who can do the surgery. It is done under a local anesthetic and takes about an hour. So I encourage you to look into a neck tube. I don't eat orally any more but I did for a long time while I had the tube. I use a 60cc irrigation syringe for bolus feeding three times a day. Since I am on a vent I also take two cups of water every three hours to keep my lung secretions thin. So you can see my tube gets used constantly. We don't take the syringes apart rather we clean it by pumping water through it and oiling it with mineral oil prior to use. Another trick is to leave the syringe half closed so the next time you use it you can push the plunger in to break the rubber free from its natural tendency to stick in the barrel. By doing this we can easily use a syringe for a month. As far as pills and such are concerned, we find mixing them with applesauce will prevent them from settling out. In general I mix medications with my meals and take all together. If I have trouble mixing them I just blend the meal. A trick to reduce intestinal gas is to suction out all the stomach contents and air before every meal. Put the liquid back in before you start the meal. Warning this can smell awful but that is normal. My insurance wont pay for Ensure either. Instead of Ensure we buy Resource. Resource has almost identical composition to Ensure and is much cheaper. We buy it in bulk at Costco. I don't use Resource exclusively but also supplement some fruit in also. As for tube plugging. With blended foods that will always be a problem. We sieve foods after blending. Don't use a fine metal sieve rather use a Tupperware spaghetti colander with big openings. That will get the big lumps out quickly and you won't have plug problems. Using a sieve you can take any family meal and blend what you don't eat. Just add enough water to make the blended food thin enough so it seives and syringes easily. As far as feedings at work. I used to have the company nurse come by and feed me. Now I have an arrangement with my insurance company. Rather than they providing me with nurses or putting me in a skilled nursing home, they give me a set amount every month and with that I hire a CNA privately for my care. I train them to do suctioning and tube feedings. This gives me much more care and costs the insurance company much less. A true win win. I encourage people to get a feeding tube as soon as you can't maintain your weight or eating a full meal gets too tiring. Then you can eat what you can and blend and tube the rest. In ALS a constant complaint of people is they lost too much weight. You must keep your nutrition up so you feel good and can do things. Also you don't want to lose weight because you need the padding for comfort. Particularly on your bottom so you can continue to sit in a chair. Don't wait to have a feeding tube put in. Like in all things with ALS you must be prepared to start early with adaptive aids, it does no good to wait until the last moment. You can still talk and eat after the operation. I had the surgery as soon as I started having trouble keeping my weight up. From then on I would eat what I could and then have the rest blended and put down the tube. Very easy! I find the neck tube to be great on the go. When I need water, medication or to eat I just stop and my aide pumps it in. People stare because it is unusual but it is perfectly normal to just syringe it in. I put a piece of silk tape around the tube when it is in position and pin the tape to my shirt. I strongly urge you to get a feeding tube earlier rather than later. There are no disadvantages.
Yours, Mike Feeding Tubes: Greg's experience In ALSD 272 there were some interesting points brought up about a feeding tube through the neck as opposed to the stomach (the G-tube or PEG tube). It was stated that, "a G-tube affects your breathing ability..." That has never been my experience with the ALS patients I have cared for....
Greg |