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I'm diggin' on good hydrations! She's giving me good hydrations! ...Page 1 Page 2 Page 3 Page 4 Feeding Tubes: Dr. Oppenheimer's comments [from the ALS Digest, in response to a question]
You said that "I've heard that a feeding tube can only be in for a
limited period of time. Is this the case?" No, a gastrostomy tube can be
used for years. It can be placed with a minor medical procedure by a GI
specialist, usually only requiring 3-8 hours at the hospital during the
day. It is often referred to as a "PEG" (percutaneous endoscopic
gastrostomy). Liquid nutrients and medications and fluids are given
through the gastrostomy tube three to four times a day. It is out of
sight when not being used. Some people take some food and liquid by
mouth, if that is safe, and take the rest via the gastrostomy tube (as
long as some oral intake is possible and desired). Edward Anthony
Oppenheimer, M.D., FCCP
[ed: PEG tubes do need to be replaced every few months. How often
depends on the type of tube and the condition of the tube site. I've
gone anywhere from 3 months to 18 months between changes.] Feeding Tubes: Types of feeding tubes There are several different types of feeding tubes, and not all are appropriate for PALS. This section discusses types of tubes, ending with the most common type used for PALS. Although IV (intravenous) lines aren't technically considered feeding tubes I've included them for thoroughness. A "central line" is IV tube well which goes into the chest and directly into the major vein in the chest, the vena cava. This method of feeding bypasses the digestive tract and puts nutrition directly into the blood stream, unlike the other tubes mentioned below. A central line is typically only used in critical conditions not directly related to ALS such as an infection in the blood. It is not appropriate for long term care that is needed for ALS. If your doctor recommends this he better have a good reason. The "food" used is a mixture of water, sugar, fats, and nutrients. It has to be sterile (because it goes into the blood) and is more expensive than liquid food used for other tubes below. The risk of infection is higher than with other feeding tubes due to the opening into the chest and blood stream. The dressing must be changed at least twice each day with a sterile technique. Peripheral IV feeding is similar to feeding via a central line except that the nutrition goes into a vein in the arm or leg instead of the chest. The risk of infection is a little lower, but far from negligible. The IV site can only be used for a few days because veins tend to collapse. Also, peripheral lines are smaller than those used for central lines and can only handle certain fluids such as electrolytes and glucose. A central line would be used if total nutrition is needed via IV. Peripheral IV feeding is usually done temporarily during a crisis. It's not appropriate for the long term care that PALS need. The feeding tubes described below deliver liquid food to the digestive system. An NG (naso-gastral) tube is a tube that is inserted into the nose and goes down the throat into the stomach. The liquid food is poured or pumped into the tube. The tube may be inserted and removed with each feeding or may be left in place for days. If it's left in place it may cause irritation, bleeding, and sometimes even infection in the nose. Inserting the tube takes some practice because the caregiver must be sure that it goes into the esophagus and not the lungs. It was stated in the ALS Digest that only doctors should insert NG tubes, but this is an exaggeration. In California, at least, every licensed nurse is trained to do it, and anyone can learn how. In a sense this is the least invasive type of feeding tube because it requires no surgery. Someone who wants "no heroic measures" taken may consider adding an NG tube to their advance directive as a means of getting food and water in a non-fatal situation. I suppose that it's possible to use an NG tube for months or years but a G-tube is better in terms of comfort and ease of daily care. A neck tube is a tube which is surgically inserted in the esophagus through an opening in the neck. The part of the tube which sticks out of the neck can easily be wound up and hidden under the collar. I only know of two people who had this type of feeding tube and they had no problems with it. See Mike's experience and Leigh and Shawn's story. One was adamant, based on his doctor's opinion, that a neck tube is better than a G-tube because the G-tube surgery damages the diaphragm and leads to earlier respiratory complications for PALS. Not all everyone agree. See Greg's experience. Discuss this with your doctor. A J-tube, or jejunostomy tube, is a tube which goes through the wall of the abdomen and into the jejunum, the first section of the small intestine. This kind of tube is usually used when a stomach condition prevents use of other tubes which go into the stomach. With these other tubes a large amount of food can be put in at one time ("bolus feeding") because the stomach acts as a holding tank. This can't be done with a J-tube; food must be dripped in over several hours. The inconvenience of not being able to do bolus feeding makes the J-tube an undesirable option for PALS. A G-tube, or gastrostomy tube, is a tube which goes through the abdominal wall and into the stomach. The most common type of G-tube is the PEG tube, or Percutaneous (through the skin) Endoscopic (it's placed with an endoscope) Gastrostomy tube. See my story about my PEG surgery. This is the most common type of feeding tube used for PALS and the most appropriate (with due acknowledgement of the neck tube debate). The risk of infection is low, sterile technique is not needed (the inside of the stomach is not a sterile environment), maintenance is simple, and the possibility of bolus feeding is convenient.
God bless you on your journey, Wayne S. Phillips Feeding Tubes: PEG surgery The procedure is simple and usually takes about 15 minutes. Mine was an outpatient surgery with both a general surgeon and GI specialist. They gave me a mild sedative. They also gave me Verced, a drug to make me forget the procedure, but I don't know if that is standard. They can't put you out completely because you have to be awake enough to swallow the endoscope. They sprayed the back of my throat with an anesthetic. Then they put a plastic mouthpiece in to keep me from biting down on the endoscope, but I couldn't get my lower lip out of the way and it got mashed between the mouthpiece and my teeth. They didn't notice because the lights were dim. Ask your docs before you get the drugs to be careful about this! I came out with a very swollen lip. That's the last I remember, but they had explained the rest. They put the scope in my throat and told me to swallow. The scope has a camera, a bright light, a grabber, suction, and air. They pumped my stomach full of air to press it against my skin. This also let them look around in my stomach for ulcers or other problems. (Later they gave me snapshots of my stomach as a souvenir.) They used the light to locate the stomach from the outside and poked a hollow needle through the skin into the stomach. They put a wire through the needle which they grabbed with the scope and pulled out my mouth. Then they used the wire to pull the feeding tube down my throat and out the hole. There was a plastic piece on the tube inside my stomach to keep the tube from coming all the way out and another one on the outside to keep the stomach tight against the skin. When I came out of the drugs in the recovery room I felt like I would throw up because of the air in my stomach. But a few burps took care of that. If you have a tube without a one way valve, you can ask the nurse to take the air out. I was sore but not really in pain. The soreness was gone in about a week and the site was healed in 2 or 3 weeks. It oozed a lot while healing. The doctor arranged for visiting nurses to stop by a few times. Before surgery the doctor was very helpful with discussing anatomy and the surgery, but left us nervous because he couldn't tell us much about what using the tube and caring for it would be like. As with other issues it was the nurse who helped us the most with practical daily care. She showed us how to clean it, helped us with feeding and using the pump, and checked for infection. Get some help if the pain is worse than that. One PALS had ongoing sharp pain, and a nurse told him that was normal and he just had to live with it! If someone tells you that, don't believe it. The minor difficulties are far outweighed by the benefits for me. I had more energy and stamina after a few days due to getting enough food and water. I started gaining weight back. Meals didn't take forever. And the risk of choking went down because I take so little by mouth. I'm glad I did it and I'm sorry I waited so long to do it, which is what I hear from others.
God bless you on your journey, Wayne S. Phillips Feeding Tubes: Routine care A nurse came to our house after the surgery to check on the healing of the site. We learned a lot more about daily use and care from her than from the doctor before the surgery. The G-tube site needs to be cleaned with peroxide on a cloth, piece of gauze, or cotton balls because there is usually some leakage around the tube where bacteria may grow. You don't have to use sterile technique because the stomach is not sterile. In the hospital they want to do this at least once each day, but at home I did it Mon-Wed-Fri. I only had one infection in 4 years of this routine. How often you clean yours will depend on how much leakage you have. Discuss this with your doctor or nurse. You will have more leakage and need more frequent cleaning for a few weeks after the surgery. You need to watch for signs of infection. The site should never be sore to the touch (after it heals from surgery). Besides soreness, watch for leakage of puss or blood, redness, or a bad odor. See your doctor if you notice any of these. I think they always put in some "standard" tube in surgery which they swap out in 2 or 3 weeks when the site has healed. The tube needs to be replaced every few months. How often and how it's done depends on the type of tube you have. The tube is removed and another inserted, leaving the hole into your stomach open for a few seconds. It's NOT done with an endoscope! The first couple of types of tubes I had required an outpatient visit to the GI doctor at the hospital to change. One of those tubes lasted 18 months. These changes involved a little pain for a few minutes. Then I got a Mic-Key button tube, which I highly recommend. See Ballard Medical for more info. It's held in place with a balloon inside the stomach which is inflated with saline. The balloon is deflated for easy, painless removal. My wife easily changed it at home, and the nurses at the hospital say they wish everyone had this type. It has a flat plastic piece on the outside which looks like a button. You attach a plastic extension tube to the "button" to use it, and when not in use all that is exposed is the button. These need changing every 4 to 6 months.
God bless you on your journey, Wayne S. Phillips |