I have a question about a feeding tube

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Edith

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My mother is going to have her feeding tube put in today. I thought the feeding tube would be in her stomach but her doctor has told us that it will be in her lower intestine because the stomach is a muscle and it will eventually be affected by ALS. Won't she still feel hunger if her stomach is not being filled?
 

ccox

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Hmmm, good question. My mother's PEG tube leads directly to her stomach.
Good luck to her. I hope all went well for the tube placement.
 

Edith

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Thank you. I am still waiting to hear how the surgery went. I was going to go to the hospital but it is a 2 hour drive and we are having a storm today so my brother told me not to come, that he would be there and he would let me know how it went. I am so concerned about her. I don't feel her doctor is very knowledgeable about ALS so I'm hoping the surgeon has some expertise in that area.

I didn't think the stomach was affected by ALS since it is not a voluntary muscle. I just don't want her to be feeling hungry all the time. She has not been able to swallow anything much for weeks now and sometimes cries because she is so hungry. God, what an awful disease. People ask me how she is doing and I just say as well as can be expected because how could anyone ever understand what she is going through and what we, her family, are going through?

I have such mixed feelings right now. She is my mother and I love her so much, but if they called me and told me that she had not made it through the surgery, in my heart I would be happy for her. It would be a blessing. She is so tired of living this way and wants to die. One of the hardest parts for her is not being able to speak. She was always embarrassed because she was not a good speller and now that is the only way she can communicate with us, by pointing out the letters on her letter board. Sometimes she cries because we don't know what she is trying to say to us.

I could go on and on, but what's the point? Curse this disease.
 

Icanmanz

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Edith, I wish I could give you and your sweet mom a hug. God bless her. I know about the despair. It breaks your heart, doesn't it? Bless these folks, I know that God has a beautiful and peaceful place for them in Heaven.

Irma
 

ccox

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Edith, how did your mom do? Don't feel bad about having mixed feelings. I thought the very exact same thing you did when my mom had her tube put in.
The stomach continues to work, it's your mom's inability to control her swallowing that is the problem. She runs the risk of taking whatever she's eating into her lungs instead of her stomach---thus the tube leading directly to her stomach.
I wish you good luck. My mom had hers placed on Tuesday and is struggling because she was so weak to begin with.
 

awransburg

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I had my feeding tube placed two weeks ago and am just now beginning to feel good. I had to visit the emergency room right after the procedure due to fainting and then fainted again resulting in a hospital stay overnight. Several home healthcare nurses have visited me and offered excellent advice and I am learning along with my family. I really do feel better, but you have to be patient because I felt horrible for a full week and very nauseated the next week.
Hope you moms feel better soon. You are in my prayers.
Anne
 

Al

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Hi Edith. Sorry about your mom. I've been around a while and am not a doctor but have never heard of a PEG tube being anywhere other than the stomach. I'd be interested in hearing where it does end up.
AL.
 

Edith

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Thank you to all who responded. Mum's surgery had to be delayed for a day because she was so dehydrated. She was operated on Saturday morning and the surgery went well. She had her first feeding through the tube yesterday while I was there with her. She was experiencing a lot of acid reflux but they tipped the head of her bed up and that seemed to help. The surgeon told us that she would not feel hungry because that sensation did not actually come from the stomach, but from the small intestine. Depending on how well she does with the feeding, she may be able to be transported to a hospital nearer home today.

I love her so much!
 

Susan613

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Hi Edith,
My Mom had her feeding tube inserted in August, and she's doing well with it. We give her Boost, water, and gatorade through it, and also melt her blood pressure pill and vitamins in water, and give them through the tube. I know what you and your Mom are going through, believe me. I understand completely! We'll cry a lttle , and then we'll think of something to laugh about. Just try to look at the good things everyday...whether it's the sky, the birds, flowers, happy memories, and the fact that you have each other! That's what we try to do. It's hard, I know. I love my Mom with all of my heart, too!:-D Just get through each day the best you can.
Take care, and God Bless you both.....
Susan
 

ccox

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Edith, glad to hear your mother is on the mend and she'll be closer to you.
One thing my mom and her husband figured out pretty quick was that they can't get a whole can of supplement in her in one feeding at first. I think it was a full week before they were able to do that. It takes a while for the stomach to adjust to the amount, I guess.
Take care,
Carla
 

Edith

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Update

Hello all. Well, it has been quite a week. Mum had a really rough time the first 4 or 5 days of tube feeding, vomiting and diarrhea, a lot of pain. By the way, the tube was placed in her small intestine. I did a quick search on the Internet and found that it is sometimes done that way. Anyway, I spent the afternoon with Mum today. She is still not doing great but they have made some adjustments to the amount of food she is getting and have given her something for pain and a mild sedative as she was very, very agitated. It is discouraging because we had hoped this feeding tube would give her some comfort as she was hungry all the time due to her inability to swallow food and she had lost so much weight. But it has only been a week and maybe a few more days will make the difference.

She got quite frustrated today because she wanted me to do something for her and I wasn't able to figure out what she wanted. Eventually I did figure out that she wanted a pillow moved, but she was crying and I was shaking and sweating. I'm afraid I'm not very good at helping with her care, but I do like to be near her. I wish one of my sisters had been there with me because they are better at figuring out what she needs. I mostly just hold her hand and tell her how much I love her and thank her for all she has done. Today she reached her hand over onto mine as if to hold my hand. Even as sick as she is, she can still give and receive comfort with a touch.

Thanks for listening to me ramble. I have a house full of teenagers who only want to hear pleasant things and a husband who tries to be supportive but he doesn't really get it like people who have been there, so it's nice to have this place to come to.
 

Jane

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Hello Edith, I hope your Mom soon gets more comfortable with her PEG tube.Once the initial soreness was gone (after a week or ten days) my sister had great success with hers. We used it for all meds. and a few other things like clam chowder and occasionally a coffee! We would puree and then thin to correct consistency to go in the PEG. Since it was flushed before and after each use it also got more fluids in her.
I wondered if you have an alphabet board to help you comunicate with your Mom. We also found a picture board a great help. We cut pictures out of magazines and glued them on a stiff board. We used a picutre of a blanket to indicate she was too hot or cold. Picture of a vacuum cleaner meant she needed to be suctioned, I'm sure you get the idea. All Sis had to do was blink when we pointed at the proper picture. When all else failed we resorted to the alphabet board and she spelled out words again by blinking at the proper letter, this method is slow.
Communicating is the most difficult problem I hope these ideas will help you.
take care
Jane
 

Edith

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Mum does have an alphabet board and spells out some things but as you say, it is slow and a little too much effort for her right now. But we never thought of a picture board. What a good idea. I will talk to my sisters about it. Thank you.
 
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