This patient support community is for discussions relating to stroke, rehabilitation, ability to eat/swallow, alertness, bowel/bladder control, depression, motor skills, nutrition, orthotics/braces, pain, prevention, senses, and spasticity.
My sister, 32 years, sufferred a stroke about 2 months back. She is at home since last one month totally bedridden. Nutrition is by feeding tube. Of late, we have started giving her one nutrition (lunch and soup) by mouth . We feed her thickened liquid and water. Sometimes she takes it but taking water is the difficult part. Sometimes she starts coughing after 2/3 spoons of water although she takes in thickened liquid apparently with no problem.
What precaution should we take while feeding her?. Has the time come to remove the feeding tube which is already 2 months old ? or we should keep the tube as an alternative ? Is the feeding tube causing difficulty in regaining her voice, which has also been lost although the stroke was on the reight side of the brain.? She was able to produce sound only once or twiece in the two month period and that is also of crying?
Sorry to hear about your sister.. You should be very cautious feeding her foods that are causing her to cough -- being bedridden and with poor swallowing predisposes her to pneumonias and feeding her when she is not quite ready only worsens that risk. Some patients take a while until they are able to have their feeding tubes taken out -- sometimes it never happens. But it's good to complement her feeding tube feeds with "some" foods that she can tolerate. But be very careful.
Feeding tubes do not interfere with her ability to speak. If anything, they provide for better nutrition to help her recover faster.
Do a search and read my previous posts. Aspiration pneumonia is VERY dangerous. As to whether the swallow reflex can be developed, sometimes and sometimes not. Sadly, most enteral feeding tubes are initiated because of a failure of nursing care. They are rarely necessary. The fact is that the kind of care to insure hydration and butrition often just isn't available. I do not believe in the thickeners because they continue to thicken and thence cause constipation, but many hospitals use them sucessfully. They pay a lot for advertising. There are enough naturally thickened fluids. Think Jello, which will often stimulate the swallow reflex and not end up in the lung. Think small spoonfuls administered at LONG intervals with the patient sitting upright with a hand on the back and the spoon approaching directly from the front below the level of the chin. Eventually you want the patient to feed themselves. Pureed organic pea soup with hot sauce is a good stimulant. My little 102 year old sweety pit initially has severe thin fluid swallowing problems, and they have dinminished, but ocasionally return. NEVER feed in bed. Always stay with the patient after feeding. I like to have the hand on the back because it gives me a good feel for any fluid entering the lung. Small pieces of seedless watermelon cut in small pieces are excellent to stimulate and re-educate the swallowing complex. And to rehydrate. There are a thousand reasons why the enteral feeding tubes should not be used, but the alternative is a meticulous nursing care most are not prepared to give. Many stroke victims have disturbed circadian rhythyms, and are only able to swallow at odd hours of the night. If this meets a 2 A.M. feeding, my little sweety pie feeds at 2 A.M. There are different kinfds of strokes and varying degrees of damage. In some cases the ability to swallow cannot be restored, but I believe most rehab facilities give up far too easily. FORCE FEEDING IS CONTRAINDICATED and is grounds for immediate dismissal of any aide or nurse who does so. Plain water by mouth is a bad idea. It almost always ends up in the lung. You can use unflavored jello or mix the unflavored jellow with a small amount of fruit juice if you are sugar conscious. NEVER FEED WHEN THE PATIENT IS TOO SLEEPY, and do not aaaume that just because they open their mouth you should shove in another spoonful. During the early periods of rehab with my little sweety the meal periods often extened to two hours, with ten minutes between spoonfuls. There is also a diminsihed transit time for the food to travel fown the esophagus. Never feed fluids that have been left out and are not fresh. If some accicdentally enters the lung you don't want an infection. My "pie" now 102 and four months and, incredibly, her ability to speak and understand continues to imrpove.
This business of being "totally bedridden" has to end. This involves hiring aides who can physically lift her and she should be sitting in a chair during the day watching television, and taken outdoors on a daily basis in a wheelchair. Bedridden patients develop additional strokes and the answer is NOT blood thinner. This is invariably a problem. With my sweety-pie the aides complained about getting her safely to get a shower so I arranged a twice weekly two hour overlap of shifts, so two woman would be present. They are good aides, but I am the one who exercises her every day because they fear "hurting their backs". I fired three nurses, three doctors and I was going to say 31, buit it ended up being 32 aides. You need a comfortable chair. I just bought my little one a nice one. Get one that can be cleansed if there is a urine spill. Don't get fabric. I do not like the electric chairs of the lazy boys because they discourage movement. If possible, it is preferable for your sister to get into a professional rehabilitation nursing home program. As of yesterday. These programs are from two to twelve weeks long and are designed for the person to regain mobility. They are all well worthwhile. Unfortunately they are hard to get in to, and often establish "criterion" that is hard to meet. If she goes off the tube you will have to watch her like a hawlk for dehydration. If she becomes dehydrates she may have to return to the hospital for inttravenous hydration. This is common and don't let them talk you into putting the tube back if this happens once or twice. Check with your hospital to see if they have an "urgent admission" program. The hospital I am involved with now has such a program that enables you to "bypass the emergency room" and get a stroke care specialist that can provide such services as 14 hours of emergency intravenous hydration without formal admission. There are complications to rehydrating too quickly and because you are untrained will not allow you to moniter an IV at home. Make sure you have your physicians cell phone, and if he/she won't provide it get another doctor. By the same token use the number ONLY for emergencies.
Fatalities sometimes occur with stroke patients with swallowing difficulties.These occur due to (a) pneumonia (b) larangospasm and (c) an asthmatic reaction tofood in the lung. The food or liquid is senses as an antigen(non-self substance) and largue quantities ofmucus are thyen produced which block the airway. Death can occur within ten minutes. Pre-existing asthma is usually a co-factor. The larangospasm is protective in nature, bu tcan block the airway. Basically, allpatients with thin-liquid swallowing disorders should have an emergency ALBUTEROL nebulizer. These nebulizers come in two types.You need the long white tube and the high-pressure type. Therse are no longer being promoted because I wastold by a hospital phamacist the propellent has been determined to be harmful. But you need only ALBUTEROL and NOT. REPEAT NOT ANY other asthma control medication. You can kill your patient using one containing steroids, because it will guarantee a lung infection if food is in there. You will require a prescription for the albuterol, which your physician probably will not give you, demonstrating the fact his knowledge of the problems of the stroke patient with swallowing difficulties are non-existent. In such a case get one from a friend with asthma.They cost about $25. Again, ONLY ALBUTEROL. This is ONLY to be used if the patient develops mucus plugs. You can tell this with a sthethascope or a hand on the back, of more commonly the patient begins to wheeze and the lips and fingernails will turn blue. 911 time. Without that albuterol you are in trouble. Thge little bit of food causes an asthmatic reaction and it is not the food that causes cesation of breathing but the hard mucus which develops rapidly. This is an unapproved use, but a single puff or two has few contraindications in such a case. It is ONLY FOR AN EMNERGENCY. Again,someone will ask my credentials to give advice. I'm only eleven years old and my mom lets me use the computer so I claim no credentials, but ask your own physician, or do what you want, butI believe that emergency albuterol is an absolute necessity. They have littlecups that only permit a tiny sip at a time of water.I boil water ( to serilize it), put plastic over the top to keep out bacteria, and when it coolsput it into two ounce plastic cups and freeze them. If the patient can tolerate cold (some can't), and can hold a cup, the ice will melt ateensey bit at a time and if they suck from the cup, only a few drops will go down each time. Of it completely melts, you have simply a cupof water.
The Albuterol that I cannot legally suggest you use on this board is manufactured byWarwick Pharmaceuticals, Albuterol USP,Inhalation aerosol 17g, 200metered doses. Each actuation delivers 90mcg of albuterol. Shake it first and discharge the first two puffs into the air. Then use it on the patient. Read ene enclosed data sheet with cautions and precautions, but two puffs should cause no problems.The instructions are, exhale completely, purse lips around themouthpiece and inhale as the puff goesin, then hold your breath. This may not be possible.Mucus plugs do NOT always form, but asthmatics are especially prone to them and you can develop an asthsmatic sensitivity at any time.If food goes into the trachea and down into the lung and that mucus begins to form, this aerosol is the only thing you can safely use as a civilian that will save a life in such an emergency. Again - NO NOT USE ANY OTHER ASTHMA MEDICATION.
With my little 102 and a half year old I find there seems to be an"optimal size" of a food that she finds to provide her with the least difficulty in swallowing. She will have trouble with a tiny bit of watermelon, but increase the size by three times and she does find difficulty. A tiny bit of banana is cheeked or causes difficulty, but she munches on a one inch piece very well.I found she enjoys hommus,which is a good protein souces and provide her with at least two highly spiced flavors with her usual fish meal. Whitefish salad also is swallowed easily. A habit I had to rid the aides of was "holding her cup". The rule I made up is is, if she can't hold the cupin her own hand, don't feed.It tookmonths for her to be re-taught to use a spoon, let alone lift a cup. Incredibly, her verbalability and awarenessof her surroundings continues to increase.
Another caution is toinsure allfood that has been "cheeked" is swallowed BEFORE allowing the patient tolie down and go to sleep. Often people are "afraidto wake strokepatients up". A gppd way to insure "cheeked"food is swallowed is (a) insure the patient is alert (b) provide a piece of banana that you can observe the patient chewing and swallowing. The cheeked food will go down with the banana. This is "sort of" an exception to the rule never to feed if they are not swallowing. The biggest problem I have found is chewing and NOT swallowing a piece of watermelon, then going to sleep with the piece in the mouth. I wake her up, then give a bit of banana and the watermelon goes down with the banana.
The use of a small slice of banana to "clear" the cheeks of debri a half hour before bedtime has worked out well. To my surprise, my little camper has often chewed watermelon and left a segment in her mouth, unswallowed. I alternate pieces of watermelon and slices of banana now. You have to select ripe, seedles watermelon and hand cut and select every piece to insure they are not too tough or stringly. It is very important never to let her go to sleep with something "cheeked". Her hand coordination continues to increase. The biggest problem is discouraging the aides from "popping food into her mouth" and insisting she reach out, hold the food, and put it into her mouth herself. The provide her with a box of tissues and permit her to remove the tissue from the box herself. There is a misunderstanding on the part of many home care aides that day-to-day activities muct be evaluated in terms of a "therapeutic experience" rather than ends in themselves.
I have another friend in a "good" nursing home and while visiting discovered he had been fed jello with an expiration date of three months ago on the package. The nursing staff and administration were unconcerned. With my litte camper I make fresh jello and pour it into two ounce plastic cups to "harden". That way it will never remain out long enough to collect and breed bacteria. The sugar jello mixture is an ideal culture medium and once opened and contaminated with a spoon should be discarded.
Another good "swallow friendly" food is organic applesauce, however many people with swallow difficulties do not like "cold things". The trick is to "warm" the applesauce. Applesauce should not be left out, as it is a good culture medium for bacteria, and I always make up small servings to prevent waste..
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