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Feeding Tubes: Marty's story [Dec 1993 ALS Digest] I'm principal caregiver for my wife, now aged 68, who has had ALS for 2-1/2 years. This summer she made a decision to go for a stomach feeding tube since her swallowing had become so difficult. Mealtimes were lasting 2-3 hours, even with pureed foods; she was not getting sufficient nutrition and particularly not getting enough liquids. She had a problem with excessive mucous and saliva which were difficult to manage. The physicians who recommended the procedure described it in terms which made it seem no more than a tooth extraction. Then we learned it required an overnight stay in the hospital which my wife dreaded. She is unable to communicate; cannot move her limbs; requires frequent turning during the night. I arranged with the hospital for a private room with a cot for me and they were very accommodating. What started out as an overnight stay turned into six nights in the hospital because of complications. The physicians never mentioned that there was a possibility of stomach distention and trapped air in the intestines. We opted for "bolus" feeding rather than "continuous drip" , not wanting to be tied down to an IV bag all day. However, with feeding every 4 hours for nutrition, preceded by a digestive aid a half-hour before, and a laxative/fluid feeding in between, we are still ruled by the clock. Feedings are supposed to start at 6am (with medication at 5:30) but more often than not she refuses that one preferring to sleep. Since the tube was inserted she has taken nothing by mouth. Tried some apple sauce the first few days but gave it up. However, the mucous problem ceased and the saliva build-up has been manageable. Tube's entry point needs careful cleaning each day - peroxide and change dressing - nothing complicated. Caregivers have had no trouble mastering the technique. The gastroenterologist prescribed Osmoilite and she has been on that exclusively.
All the best to you and yours in the coming year. Feeding Tubes: Michael's story [Dec 1994 ALS Digest] I had a feeding tube put in about 7 weeks ago. No trouble except maintenance is required at the entry point. I have to swab down the entry point area with a cleaner 2 or 3 times a day. I have some leaking around the tube at the entry point. But they say they can put a larger tube in eventually with will not leak. This is all and I gained 10 pounds in 7 weeks and I am the desired weight that I wanted to be. I had some discomfort after the operation but this was not hard to deal with. It's worth it to have my weight back. My tube is called a BARD. There are many different types of feeding tubes but the BARD is supposed to stay in the best.
Regards, Michael Feeding Tubes: Leigh and Shawn Mine is not a stomach peg, I have an alignment problem. Something about being to high behind my diaphragm. I have a neck tube that goes down the esophagus. My wife Shawn is my principal care giver. She has found that a stone, maybe it's marble, mortar and pestle works wonders on pills. You can find these at a good cooking equipment store. We have two, one for my medications only and another for spices and such. Shawn puts the ground pills in a cup and with about 20 cc's of water and pulls the medications into the syringe. She then "pushes-and-pulls" the medications in and out of the syringe till they dissolve, or at least until they are in suspension. She also makes sure that there is at least 10 cc's of air in the syringe. With the syringe, plunger end up, she can "see" when all of the liquid has entered the feeding tube by watching the air cushion. If this is with meals - she first gives me the medications and follows the medications with the bolus food mixture. If this is between meals - she follows the syringe of medications with a full syringe of plain water from a little 50 ml plastic medication cup. Mike's point about the extra water is so very important for keeping the lung secretions thin. Shawn's trick here is that every feeding is followed up with the water, but as important, it guarantees that the feeding tube is always flushed with clear water. So I get the water and we know the tube has been flushed, always.
Regards, Leigh and Shawn Feeding Tubes: Dick's story [May 1996 ALS Digest] My wife has been displaying symptoms of ALS for 2-3 years, but we just got the diagnosis in January. She has severe bulbar symptoms, making chewing virtually impossible. In November, it was suggested that she might want to look into having a feeding tube installed. By this time she had lost over 20 lbs because she couldn't eat enough. We were doing Ensure drinks and pudding; she would start trying to eat first thing in the morning and then eat (at a very slow rate) virtually all day long. By Christmas time she was down to less than 80 lbs and we couldn't wait until the scheduled date for the feeding tube. She ended up in ICU for 2 weeks because of her inability to intake enough nutrition. We have had the PEG (feeding tube) for 4 months now and the only complaint we have is "why didn't the doctors push this more vigorously?" Her quality of life has been so much improved by the PEG. Most likely she would have passed away months ago without it. Does it interfere with things? No, not really. She is hooked up to the feeding pump at night and gets 1200 - 1500 calories that way. When she isn't hooked to the pump, the tube is out of sight and out of mind. It gives us a way to administer medications without needing to swallow. She is still mobile so it is important to her that the tube not tie her down to a bed, and it doesn't. The PEG was certainly one of the best things we have done for treating the problems brought on by the ALS. We really would recommend it to any ALS patient with swallowing problems; it allows her to do things besides spend entire days trying to get enough nutrition to stay alive.
Regards, Dick Feeding Tubes: PEG vs. PRG PEG may not be the best technique. Talk to your doctor. Amyotrophic lateral sclerosis: enteral nutrition provision endoscopic or radiologic gastrostomy?
Source: Radiology 2002 Sep;224(3):713-7
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