Time for Feeding Tube ?
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edna may
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To Tube or not tube That is the Question
HI There, I have educated myself enough to make a decision on the tube. I consulted with the surgeon & feel it is a wise way to go. So this coming Monday I will have my very own tube & learn first hand what it what it is all about. You will be hearing more from me on this subject. Be good to your selves. EMedna may said:
midwestgirl
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This has been a hard week for my mother. One and a half weeks ago she had the flu - a basic twenty four bug, but after that she seemed to have more trouble swallowing. Five days after recovering from the flu, the doctor put her on Cymbalta - which she had a reaction to - another bout of vomiting. The medicine was dc'd, but swallowing still very difficult. Mom has decided maybe a feeding tube is a good idea. She wants to think on it tonight. Anne, you said there is about a 10 day recovery time - what should we expect after getting the feeding tube? I know there is a possibility of infection ( please, no!), but I was really thinking that after a couple days mom would be feeling much better. My mother is 76 years old, or will be April 18th, no respiratory problems yet. Any advice appreciated!
rolark
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We had our first Feeding Tube discussion at our last clinic appointment.
Gail's problem is not as much with ablitity to swallow - as it is biting the inside of her mouth.
Gail has to be fed all meals now - which is time consuming. She chokes on pills when taken with water but can still swallow fairly well.
Manipulating food inside her mouth is very difficult and she continually bites the inside of her cheeks - they get swollen which causes her to bite them more!
The feeding tube seems to be a pretty good solution all round. We were told you can still eat what you want - (so Pringles are not out of the question!) when you want, but the stress of getting enough calories daily has been removed. Gail was only eating 1/2 pc of toast - without crust for breakfast.. 1/2 sandwich no crust for lunch... & small dinner. We started on 3 Ensure's a day. That brought back her appitite.
Also taking those dredded pills including Rilutek which bubbles up and fizzes when it gets wet will be much easier. Just pop them in the tube?
We haven't made the final call on the feeding tube yet - but talking to the Doctor made it seem like a much better idea than the stigma attached to it. Our one ALS friend with a tube said it was one of the best moves she made.
Tim
Gail's problem is not as much with ablitity to swallow - as it is biting the inside of her mouth.
Gail has to be fed all meals now - which is time consuming. She chokes on pills when taken with water but can still swallow fairly well.
Manipulating food inside her mouth is very difficult and she continually bites the inside of her cheeks - they get swollen which causes her to bite them more!
The feeding tube seems to be a pretty good solution all round. We were told you can still eat what you want - (so Pringles are not out of the question!) when you want, but the stress of getting enough calories daily has been removed. Gail was only eating 1/2 pc of toast - without crust for breakfast.. 1/2 sandwich no crust for lunch... & small dinner. We started on 3 Ensure's a day. That brought back her appitite.
Also taking those dredded pills including Rilutek which bubbles up and fizzes when it gets wet will be much easier. Just pop them in the tube?
We haven't made the final call on the feeding tube yet - but talking to the Doctor made it seem like a much better idea than the stigma attached to it. Our one ALS friend with a tube said it was one of the best moves she made.
Tim
landscape
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Just a general comment on eating problems. My husband has considerable weight loss and chewing is hard work for him. We have recently been avoiding bread and choosing soft tortillas instead. They seem to be a lot easier to eat--some brands seem more tender than others.
In response to the very first message in this thread, I'd feel that if someone was coughing while drinking, I'd avoid straws. They can deliver a large amount of fluid to the back of the mouth in a hurry thus making it more difficult for the swallowing mechanism to operate safely. Particularly as fluids are more difficult to control than thicker material.
As other people have commented I'd also be horrified to think that someone would be required to experience several instances of aspiration pneumonia before being considered for a PEG!
I've recently bought a copy of 'The Dysphagia Cookbook' by Elaine Achilles (at Amazon) and have found it to be really useful. I also got a small food processor that I could leave on the counter and it has been a great help for chopping meats. I already have a blender that gets a lot of use.
In response to the very first message in this thread, I'd feel that if someone was coughing while drinking, I'd avoid straws. They can deliver a large amount of fluid to the back of the mouth in a hurry thus making it more difficult for the swallowing mechanism to operate safely. Particularly as fluids are more difficult to control than thicker material.
As other people have commented I'd also be horrified to think that someone would be required to experience several instances of aspiration pneumonia before being considered for a PEG!
I've recently bought a copy of 'The Dysphagia Cookbook' by Elaine Achilles (at Amazon) and have found it to be really useful. I also got a small food processor that I could leave on the counter and it has been a great help for chopping meats. I already have a blender that gets a lot of use.
Laurie Lister
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Feeding tube
Hey sweetpea
My husband has bulbar and we went through the straw. Pureed food might make it easier for him to swallow. My husband was still able to eat some foods like pudding and scrambled eggs when we decided to get the feeding tube. It was the best decision we made because not long after he could not swallow anything not even water. Straws are dangerous to bulbar greater chance of aspirating, which leads to phonomania. Discuss this issue with your doctor. Better to have in to place before one day you wake up and he can't take anything orally.
Good Luck
Laurie Lister
Hey sweetpea
My husband has bulbar and we went through the straw. Pureed food might make it easier for him to swallow. My husband was still able to eat some foods like pudding and scrambled eggs when we decided to get the feeding tube. It was the best decision we made because not long after he could not swallow anything not even water. Straws are dangerous to bulbar greater chance of aspirating, which leads to phonomania. Discuss this issue with your doctor. Better to have in to place before one day you wake up and he can't take anything orally.
Good Luck
Laurie Lister
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