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To those of you who have AMT balloon buttons. How long do you use your feeding extension tubes? The AMT website says they should be changed every two to three weeks. Is that your experience? I went longer than that when I had the Mic-Key. This will be my first AMT button.
Thanks for your advice
Peg
I use the Mic-key extensions with my AMT button because I like them better and I usually change them every two weeks because that's when they seem to get really yucky.
But this might be different for you - I hook off at 4 AM in the morning and just rinse them out with water and don't clean them with soap until the next evening before hooking up again. I guess they might make it longer if I cleaned them with soap right away, but I can't manage that cognitively at 4 in the morning :-)
Julia
Peg07,
I recycle the ends and make my own extensions using tubing from Ace Hardware. They last at least a year. I have one that has been working about 14 months.
Steve
If you clean them with denture cleaner, it works very well and makes them last a lot longer.
I bolus feed with a Mic-key so I clean the tube 4 times a day (after each use). I'm on my third tube in 18 months, but the other 2 are still usable. I put them in my travel gear for use on the road. Use lots of hot water.
Thank you for sharing your experience. Makes me feel better. I am continually amazed at the ingenuity of this group. You do inspire me.
Peg
Steve, So how exactly do you secure the new tubing to the ends? This is very interesting!!!
momto2girls,
I like the right angle fittings on the Kimberly Clark extensions. They maintain the "low profile" aspect of the AMT mini one button.
So first thing I do is remove the locking right angle fitting by using a toothpick and prying and pulling on the old britle tubing. It usually comes out cleanly. I then remove the other end doing the same thing. Pry, pull, poke. I then cut a 2 foot piece of the clear vinyl tubing. I use the 1/4 inch outside diameter by 1/8 inch inside diameter size. I take a cotton swap soaked in alcohol and clean the ends of the tubing and the inside of the female catheter fitting where you removed the old tubing. I clean the outside surface of the right angle fitting. I use a tapered steel punch to stretch the 1/4" vinyl tubing by putting the tubing in a small cup of VERY hot water and then force the punch into one end of the tubing and letting it cool. You could probably use a pencil or other tapered rod. Once cool I remove the punch and spread a bead of crazy glue on the outside of the tubing. I the insert the tubing into the catheter fitting. Let the crazy glue dry for an hour. Gently rinse the tubing and fitting in tap water.
The next part I always forget but you won't! Take the little white clamp from the old extension and slip it onto the new tubing before you attach the right angle fitting!
Next take the other end of the new tubing and put it in VERY hot water. Force the tapered punch into the tubing. This will stretch the tubing. While it is still warm remove the punch and force the right angle fitting into the now flexible vinyl tubing. Push the tube all the way over the outside of the right angle fitting. No glue required here.
I have made several of these and they don't stain as badly as the 'store bought' brands. They stay flexible. And they clean easily by rinsing with soapy hot water and then clear water. You may need to redo the glued on end from time to time. I have the first one I made 14 months ago and still use it daily. It sure beats the hassle and cost of the store bought extensions.
One disclaimer. I have no idea regarding the medical grade worthyness (not sure that is a word) of the Ace brand vinyl tubing and the crazy glue. But they work for me!
Kind of long winded but good luck,
Steve
I tell you what. You send me your old extension and I will put one together for you and send it back to you.
THANKS so much for the detailed instructions!!!
I like to make things so I think I'll give it a try myself, but thanks for the offer!!!
My daughter is using a prototype button that is no longer being worked on (hopefully they will get back to it someday--it NEVER leaks, current one has been in close to a year!) and I will eventually run out of extensions before I run out of buttons, since I have 2 spare buttons but not so many extensions. I will definitely use your instructions and see what I can figure out for her extensions....I'm thinking the ends of the mickey extensions with the connector end for her type of button--since we use mickey extensions for her J tube and the other button is her gtube.
Mine last until I can't get them clean...I get 10 a month for 2 kids and clean them with soapy water and with the pinch and glide method. Vivonex formula is the best and doesn't stick, but the cow based formula can muck up a tube~~if it stays clear, it stays in the working set. A "virginal tube" is a new one in the wrapper and they are the most treasured!
extension tubes are a huge tool for me and I can never be stuck without one (one kid needs venting about every 20 mins)...I have those tubes in every bag, car, stroller, wheelchair, people's houses, schools. I might have 50 plus extention tubes between the working set and the spares. Geez...I might be a tube hoarder (I have been stuck without one in the ER of all places and a nurse showed me how to use a syringe to just push tylenol into the MicKey without a extTube, couldn't vent really thru the syringe).
After rinsing out my extension tubes I keep them in the fridge (esp in the summer heat) to help cut down on any bacteria growth.
Steve,
And I thought I was being creative with adapting a regular backpack to be my tube-feeding backpack, but I would have never thought that one could make one's own extension tubes!!!
Julia
Wow, if your one child needs venting about every 20 minutes, have you ever considered using a Farrell bag? It gives continuous venting!
~ Lora
A farrell bag? I must research a farrell bag. He is very mobil and might not tolerate it for day use....but night use! You should see his ceiling~it is all sprayed from venting him~he is like a whale!
Poor guy, they gave him a full wrap nissen fundo' because of no swallow or gag reflex...well he swallows tons of air and it is a problem! (if I got a "do over" the full wrap would never happen).
But that farrell bag at night might be an idea (if he doesn't blow it up). Searching next....
Information on Farrell bags is posted at:http://www.oley.org/lifeline/TubetalkSO03.html
That is ingenious!
Farrel bags are a lifesaver, also. One every 24 hours is the usual that you can get rx'd, and they work really well.
They have a vent on one end so the air is released as well, with no leaks.
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