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tkjones

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I've been a member here for a while but have just lurked in the background. I was able to get a lot of answers just reading past posts but now I don't have as much time to sit down and read so I'll just start asking questions! First off, my Dad got is second diagnosis on Feb. 15, 2007. Happy Almost Valentines Day! Not. VD will never be the same to me again. In the last 7 1/2 months, Daddy has went downhill drastically. We have been putting two and two together and finally realized that he has had this monster for about 5 years or so. In February, he was still walking. Today he is wheel chair bound. Actually, I should say that he is bed bound because he is such a big man, (6'6") we can hardly get him in the chair anymore. My brothers and one nephew can but they aren't around much to do it. Anyway, I need to know . . . when it comes time to get him a feeding tube, and that time is pretty much here, where will it be placed and how do we take care of it? Can my brothers put him in his chair without hurting that tube? Will it keep him from getting hungry? I know that he will still be able to eat by mouth as long as he can but he has lost so much weight that it is unreal. What is a cough assist machine? What does a bi-pap machine do? He has one but can't stand the mask over his face. I can understand that because I can't handle my apnea mask either. Help would be appreciated!

Teresa
 

CindyM

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Hi Teresa. So sorry things are getting worse for your Dad. You are doing the right thing to get lots of information before you do the feeding tube. On another thread someone posted all the questions he wished he had asked before having the tube placed. You can probably find it by using the search feature at the top of this screen.

Also, we have a few members with feeding tubes. I am sure they will be checking in soon. Good luck Cindy
 

Lorie

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Teresa

Teresa,
I got Tim one of the Cough Assist Machines two weeks ago. It has worked wonders for him. I hope this is helpful!

Please read the following link:

http://www.coughassist.com/

I like the Ya'll. I am from Alabama.

Lorie:-D
 

nspoc

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Olympia Fields
re: feeding tube

Hi Teresa - Sorry about what you are going through. Don't be afraid of the feeding tube - piece of cake once it is in. I take care of my friend's and it is no big deal. It is placed somewhere on his belly above his waist, primarily a little left of center. Everybody's anatomy is slightly different - so cannot be more precise.

You can do pretty much anything with it in. I know of people who go swimming. You feed them by hanging the liquid (from a canned formula, Ensure, whatever) in a bag for at least a half hour per can, can is 8 ounces. There are other ways to put in the feeding, but the bag thing (like an IV bag) is very easy. Many of our people on this forum say they go to family parties, picnics, etc, and get fed when they are there. The tube is long enough that you do not have to take off your shirt. You just tape it to your chest or abdomen and you are ok.

As far as lifting and positioning - not much different with the tube in place. If it is taped to the body you have less of a chance of pulling on it.

Taking care of the tube becomes a matter of squirting a large syringe of water into the tube before and after the feeding, and cleaning the bag well (very sticky formula, have to clean it soon after use, or throw out that bag and tubing).

The feeding is not uncomfortable, and the PALS gets full, just like a real meal.

Some problems can be diarrhea, especially if the feeding goes in too fast. Also a little bit of burping until you get the hang of it - took me two days.

Of all the things we have had to face - this was the easiest. It stops a lot of the choking, the PALS gets properly hydrated. Nutrition gets much better because amount does not depend on feeling hungry. We saw quite an improvement in energy and wakefulness. Actually - once she gained 14 pounds, we quit using it because her appetite came back. We are lucky enough that she has no swallowing or chewing problems at this time.

Don't be afraid of this part - and do not wait. You can wait too long and then placement becomes impossible because of breathing.

REALLY improves quality of life - and was no huge deal for me. I no longer had to plan meals, feed what the PALS could tolerate and worry about calories. I found it a big relief.

Last point - look into a lift. A basic Hoyer lift will get him out of bed into a chair or onto a commode, and into a wheelchair when the time comes. The are paid for by most insurance, and by Medicare. Don't wait - look into it right away. If you can afford it, or get help from the ALSA or MDA, an overhead lift is the way to go. The portable ones do not require installation, but cost around $3500 and up for a simple set-up. I have never been made aware of insurance paying for that. But if nothing else - get a Hoyer lift, you will need it.

I am sure the others can tell you about bipap and cough assist. As for the mask - there are dozens of different things to try - most people tolerate a "nasal pillow", talk to your Respiratory Therapist. Also - a little Zanax or Lorazepam helps A LOT while you get used to it.

I know this is long - but you asked a lot of questions. Bottom line - the feeding tube is manageable. And his and your life will get MUCH better if you can get a lift device.

Good luck and really glad you checked in with us. Beth
 

tkjones

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Joined
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Messages
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PALS
Country
US
State
Oklahoma
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Rattan
Lorie

I'm from far SE Oklahoma. We all say ya'll! I just moved back home from the Oklahoma City area to help take care of Daddy and my friends say I have already lapsed back into the hickisms! :-D I'm just glad to be back home. I just hate the reason that I came back for . . . :cry:
 
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