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ShellyRenee

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Jun 23, 2005
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Hello to all:

This is Shelly from Wisc. wondering if anyone has any advice on feeding tubes. I will be taking mom to the doctor on Monday for a feeding tube consult and then Wednesday she will have it inserted. Problem is I know NOTHING on feeding tubes. Pro's-- con's, I need help. Unfortunately for us I am finding out that doctors are really not too much help. If we don't put the questions out there they just do or do not do whatever they feel. That is another story in it's self but still related to ALS. Anyhow mom is weighing in (her corner) at 96 lbs, she has lost 20 lbs in one year. Her top weight was 136 lbs, that is when she went in to deliver a baby --- what a piggy, huh? She is choking quite a bit, even on water. Her smoking has not stopped infact I believe it is more but she will not admit to that. She still will not talk about this disease. Why are things happening SO FAST? I am trying to help her but it seems to be one thing after another. From this doctor to that doctor, I just wish one of these HIGHLY paid doctors would take her under his wing and say this is what it is and this is what we are going to do. No I have to ask the questions (right or wrong) and then I hear "well you will have to take her to a doctor who treats that". What the heck?! Rrrrr, very frustrating. Talk about rambling, I am sorry.

Any certain feeding tube better than another? ---- from an ALS standpoint that is. How about supplements? high calorie, loads of energy and vitamins. Mom takes in now maybe if she is lucky 800 to 1000 cals a day. For breakfast she will eat a banana which will take about at least a half hour for her to eat and a Boost Plus drink. The drink is 8 oz. and she was telling the other day it took her 1 and 1/2 hrs to drink that. She needs help before she dwindles away.

All advice I will take with a huge thank you.

Shelly :cry: :cry: :? :?
 

TBear

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Country
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Uxpatch
Hi Shelly:
The tube will help out with her nutrition and can provide her as much as 2000 calories per feeding. It was good in our case since pureed food feedings were takling so long and my wife was losing weight rapidly. As far as looking after the the tube, you will likely get advice and directions from the hospital nurses involved with the procedure... at least that is what happenned up here in Canada when ours was installed.
good luck!

Cheers
T.
 

Jane

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feed tube

Hi Shelly, Up here in Canada a dietician comes in and figures out how many calories are needed for each person and then perscribes the appropriate nutritional supplement.
We have not had any problems taking of the tube site. Sis finds she is not pressured to eat anymore. She too was choking and taking a long time to eat. She also takes all her meds. by tube.
It has definitely been a plus for her.
Hope you get the answers you are looking for.
Good Luck,
Jane
 

ShellyRenee

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Jun 23, 2005
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tbear & Jane,

Thank you for your reply to my post regarding tube feeding with my mom. Today was suppose to be the appointment but the dr.'s office called to cancell. Now we will try for tomorrow.
Someone had mentioned something called "ToCal" I think. She will bark at us if we say something about her eating or lack of. She says her stomach is very little and ours is BIG, ha ha. Sometimes she seems a little grouchy, that's when we back off. I am hoping and praying that once the tube is inserted (on Wednesday) she will come around and open up about this whole thing. This is hard because I don't know if she does want to just pass away and be done with it or if she is just NOT really getting any of this. She wants nothing to do with support groups or with anyone other than me or dad helping her. If I could have one wish it would be that I could read minds. Maybe not. LOL
Anyhow, thank you again and I'm sure I will be back with more questions. Gotta go watch them Packers, I don't know why they really stink this year. Oh well!

Shelly
 

Jackie1966

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Oct 5, 2005
Messages
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Feeding tube

My name is Jackie I am a hospice Home health aide I have a patients w/ ALS he too has a feeding tube; they call it bolis feeding and bolis meds he wasnt hooked to the pump he had his meds poured into his peg tub and also his liquid boost but since that time that was when he was in his home, hes now in a nursing home they took him off of the boost; he was loosing weight so now the nursing home bumped up his calorie and bumped up the protien hes gained 5lbs in a week. He is also on a vent and oxygen and is bed bound but hes also in denial about his disease I know and feel your frustrations take care Jackie :)
 

Marcia Speakman

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Oct 26, 2005
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Hi Shelly, I just wondered if your Mom had her tube in yet. My mom has a G-tube and does bolis feedings. We have had a lot of trouble but at the same time it is a big relief. Mom was eating less and less and the biggest issue was taking her meds. She could hardly swallow. She had her tube but in in August, Went fine at first but she got an infection--got over it and then her tube became displaced and the food was going between the wall of her stomach. Very painful!. She had her tube replaced in Sept. Now it is much better and I can tell by how it looks this time that it was too tight the first time. Her sight has healed nicely now. They have her on 4 1/2 cans supplement a day. They said five feedings at first but I was able to increase amounts and get her down to 4 feedings. And now I do 3. She only weighs 120 lbs. Is 77 with very very little activity so I have found if we just do 3 cans a day-1 each feeding that she can still gain wright. They have her on ensure pluse or equivelant. Equate plus by walmart is much much cheaper but she is currently using nutrien 1.5 because the hospital set us up with a home delivery and since she is 100% tube fed medicare will hopefully pay 80% and her other incurance will pick up the rest. We are waiting to find out. I hope so. Home delivery is very expensive. $3.50 a can vrs. $1 a can for the equate, but it is so nice to have a shippment come for the whole month and not to have to worry about picking it up. Mom does not like her feedings!. She gets heartburn really bad during the feeding but normally leaves soon afterwards. She is on meds for heartburn but the heartburn during feedings is quite different from regular acid reflux. She is never hungry and would not have her feedings if I did not just do it. On the plus side, she is gaining weight, Taking meds is wonderful! She will not or cannot do her feedings herself so I do them all. This makes it hard for me to get away for very long at a time. She lives with my husband and I and I am her caregiver. She also has a very difficult time walking so someone has to be here at all times now. I went through a lot with her tube in the beginning and wish I had known about this sight. It seemed I always had a question and no one to answer it. Please feel free to contact me at any time if you have a question or concern that I might help with.
 

ShellyRenee

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Jun 23, 2005
Messages
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Regarding tube feeds

Marcia,
This is a crazy road to be on. I too like you had and still do have many questions.
My moms tube was placed on Oct. 5th, might I add with very little instructions. My mom was in terrible pain and her hospice nurse (who is no longer :>) ) was no help.
From what I am getting, these tubes will leak. Moms seem to leak a slimy greenish yuck --- sorry for being graffic. This I was told was/is NORMAL. Not normal in my book but....
Once we, Dad and I mastered how to feed her things are running much better in that area. Mom can not feed herself, her fingers are too weak to flip the cap on the tube.
Sad story, my dad and my mom grew up with having to struggle. Very little money. Dad and Mom got a Foundation business going and did very well for themselves. They no longer worried about paying bills and whatever they wanted they bought. Now they did not flash their wealth, no fancy cars, no expensive trips or cruises and their house was NORMAL. In fact I am shocked at how much they really do/did have. They were able to retire early and figured they both have ALWAYS been healthy, so they chose to not get prescription insurance. Well mom just celebrated her 64th birthday and the no presription coverage is now biting them in the butt, big time.
Rilutek, $900.00 a month. Her Neurologist told us Monday, that taking this will prolong being put on a vent. ONE MONTH. Her and I talked (a little) today and she said she thought it would prolong this for a few years. She did not say if she will continue after this bottle is empty, but she did say the one month was not worth it.
PulmoCare, $85.00 per case. High calories with all kinds of good stuff for her but she is taking 4 feeds a day plus still a little eating by mouth. No presription coverage... Another nibble on the butt. Mom also seen her Pulmonologist on Monday and he told her she should stop all foods and liquids through her mouth. She was crushed, clamed right up. Depressed and I can't blame her, she was diagnosed ONLY 5 months ago. It seems to me she is going down hill fast very fast. Oh how I wish someone could say how long she will be made to suffer with this cruel disease.
I forgot to mention these tube feedings are really not changing the scale. Mom is at a whopping 98 lbs. what a fatty, huh?
My daughter will graduate from High school this year, this is suppose to be a special time but I'm afraid it is going to be a very hard up coming year. Do I hope mom is still with us at Graduatio? Do I pray God takes her to a better place? Will "the end" of her life be right at Graduation? Sometimes I have to wonder how much more God thinks I can handle. Just for the record I wish he would stop making that decision for me. LOL I think I have had enough..... :(
So Marcia, I will continue to love mom with all of my heart and be there for dad/mom as long as they need/want me to be.
Thank you to all for being such wonderful support. PAT: I am going to try to give you a call tomorrow or tomorrow night. I really hope you are around.

Good night & Sweet dreams to all,
Shelly
 

ShellyRenee

Active member
Joined
Jun 23, 2005
Messages
30
Regarding tube feeds

Marcia,
This is a crazy road to be on. I too like you had and still do have many questions.
My moms tube was placed on Oct. 5th, might I add with very little instructions. My mom was in terrible pain and her hospice nurse (who is no longer :>) ) was no help.
From what I am getting, these tubes will leak. Moms seem to leak a slimy greenish yuck --- sorry for being graffic. This I was told was/is NORMAL. Not normal in my book but....
Once we, Dad and I mastered how to feed her things are running much better in that area. Mom can not feed herself, her fingers are too weak to flip the cap on the tube.
Sad story, my dad and my mom grew up with having to struggle. Very little money. Dad and Mom got a Foundation business going and did very well for themselves. They no longer worried about paying bills and whatever they wanted they bought. Now they did not flash their wealth, no fancy cars, no expensive trips or cruises and their house was NORMAL. In fact I am shocked at how much they really do/did have. They were able to retire early and figured they both have ALWAYS been healthy, so they chose to not get prescription insurance. Well mom just celebrated her 64th birthday and the no presription coverage is now biting them in the butt, big time.
Rilutek, $900.00 a month. Her Neurologist told us Monday, that taking this will prolong being put on a vent. ONE MONTH. Her and I talked (a little) today and she said she thought it would prolong this for a few years. She did not say if she will continue after this bottle is empty, but she did say the one month was not worth it.
PulmoCare, $85.00 per case. High calories with all kinds of good stuff for her but she is taking 4 feeds a day plus still a little eating by mouth. No presription coverage... Another nibble on the butt. Mom also seen her Pulmonologist on Monday and he told her she should stop all foods and liquids through her mouth. She was crushed, clamed right up. Depressed and I can't blame her, she was diagnosed ONLY 5 months ago. It seems to me she is going down hill fast very fast. Oh how I wish someone could say how long she will be made to suffer with this cruel disease.
I forgot to mention these tube feedings are really not changing the scale. Mom is at a whopping 98 lbs. what a fatty, huh?
My daughter will graduate from High school this year, this is suppose to be a special time but I'm afraid it is going to be a very hard up coming year. Do I hope mom is still with us at Graduatio? Do I pray God takes her to a better place? Will "the end" of her life be right at Graduation? Sometimes I have to wonder how much more God thinks I can handle. Just for the record I wish he would stop making that decision for me. LOL I think I have had enough..... :(
So Marcia, I will continue to love mom with all of my heart and be there for dad/mom as long as they need/want me to be.
Thank you to all for being such wonderful support. PAT: I am going to try to give you a call tomorrow or tomorrow night. I really hope you are around.

Good night & Sweet dreams to all,
Shelly
 

ShellyRenee

Active member
Joined
Jun 23, 2005
Messages
30
oooops Sorry! I thought I lost my post but instead I double sent it. Please forgive.

Again Sweet dreams,
Shelly
 

ronney525

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Joined
Dec 14, 2005
Messages
51
hi. i have been reading all these posts. i too have a feeding tube. put in june 05. i agree the nurses and doctors have very little useful or practical info. i think part of this is their belief that als is a one way street. so in their opinion...why put a lot into it. maybe i am cynical, but thtat has been my experiences.
anyhow,from the beginning of the "tube" ii decided i wanted to make my own foods. this has worked out very well for me. i have gained 10 pounds. the first days after the tube was put in i could only take maybe 3-4 ounces of the boost formulas. ii believe this was due to lack of food for a while that my stomach had shrunk. now i take 8-14 ounces at a time. plus i continue to eat yogurts and puddings (lots of them) the conventional way !
i also use a powdered formula from twinlab called gainers fuel 1000...
in 2 scoops u get 1000calories plus many vitamins and supplements (& no cornstarch!)
my way of fixing my meals is to prepare whatever i am eating.... blend it, then strain it. add liquid to correct consistency.
for instance in the miornings i put 1-2 eggs(slightly cooked) 1/2 banana or avocado, pwdered protein, fuel 1000 and my vitamins....and it goes in the tube with no problem and i feel i am having a more proactive hand in my health.
of course homemade food is not for everyone...and each person must make their decisions based on many factors. i only advocate this because it feels right, it feels healthier,and it is quite simple to do. if anyone wants any fiurther info just e-mail me. i am happy to share.
thank you all & best wishes
oh yes...when i got my tube i was down to 103 pounds.... i started this als journey 2 years ago at 145 ! now i am holding pretty steady at 114.
 
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