Life With ALS.com

+    Diagnosed Aug 2005

+     Bipap March 2007

+     PEG July 2007

+     Trache and Vent July 2008

Still Living, Loving & Laughing

There is much debate on the best type of tube and much confusion on replacing them.

 

The first tube everyone gets has a bell on the inside, to hold it in your stomach. It also has quite a long tube which has to be dealt with, usually by taping it to your stomach.

 

Once it has healed sufficiently, usually 6 weeks, there are choices for replacement, although this tube can last up to 2 years. A doctor has to remove this initial tube and install the replacement. After that you can change it yourself at home.

 

A lot of people like a Mic-Key because the tube detaches so there is only a button showing. This type of tube has an inflatable balloon that holds it in the stomach. This balloon has to be checked periodically to make sure it is still inflated. They usually last between 6 to 9 months. It can easily be changed at home.

 

The following is my experience with various tubes:

 

I had been fighting without success to get a Mic-Key instead of the regular cheapie with a long tube attached. We have to pay for the Mic-Key and I was told it would have to be a 2 step process. My tube has to be taken out, then the depth of the stoma is measured, a temporary tube put in, then order the appropriate Mic-Key, when it arrives go back to the hospital and have the temporary tube removed and the Mic-Key installed.

 

Sounded like a lot of hassle to me! How does this sound to you?

Also, the cost is $250.00 for each and the hoses are extra.

 

I thought they could use the measurements on the existing tube but was told they are not accurate enough.

I was also told the measurement is quite important. I had noticed my existing tube can be quite tight and other times it is very loose, by at least 1 cm. I was concerned this might be a problem. It wasn’t.

 

I finally got a Mic-Key and it ended up being a quick change - found a different doctor. He yanked out the old one (literally), made a POP sound, and then the Mic-Key went in - only took a couple of minutes. No pain and very little bleeding.

 

Unfortunately the Mic-Key did not last too long. The balloon developed a leak and would not hold water for more than 15 minutes. It was also a real  challenge for my wife to attach the tube, she never did get the hang of it. It got clogged quite often as well.

 

PALS in the US constantly promote the Mic-Key but I would not recommend them. Too expensive and problematic from my experience. I am glad we tried it because it sounded like a good idea. Too bad it did not turn out that way.

We ended up getting a Kimberly-Clark MIC Gastrostomy Feeding tube 0100-20.
This tube has been great, no problems or clogs. Also the tube is short so I don't have to worry about it as it does not get in the way and we don't have to tape it up to hold it.