Hi, it's been a while since I've been onsite. Last time was after radiation/chemotherapy treatment for base of tongue cancer 2 years ago. Since then I've had two recurrences and two surgeries. Most recently, a fairly extensive glossectomy two months ago. Now I'm trying to swallow & back on the peg for the third time, perhaps for good. (I'll update my signature shortly.)

Anyway, here's my question: what's the deal with the mic-key button? No one has ever mentioned it to me. I happened to see a reference in the responses to Ebert's blog and searched it out. It seems much less obtrusive than a peg. In fact I'd been wondering about inventing something like it before I found it.

Is anyone on this site using one? Any problems with it? Recommend it? Please, tell me more!!

Thanks all!

David

I had the g tube which was long and stuck out like a sore thumb when I would wear my shirts and I hated to tuck the tail in or tape it up because of the bulge. My youngest was always fascinated with it and she eventually tugged hard enough one day, that my stitches came out. The tube ended up leaking and I had the opportunity to get it switched to a Mic-Key button.

I loved my mic-key button so much more because it was very flush with my skin and I didn;t have to worry about having a long tail hanging down. I did have to put a dressing underneath because of the oozing.

One thing is you have to make sure you have the correct trac from your previous g tube, mickey buttons apparently are mostly used in children, I barely got one by the skin of my teeth. If you like to puree your own food then I would ask about the size, for some reason MDA only had tiny ones so feeding was a little bit slower.

I was told that the buttons only last for about 6 months, maybe you can stretch it to 9.

I never had any problems with it and would recommend it! I loved the fact that I could swim with it!!!! I would just put a large waterproof bandaid on it and go swimming, even though the GI dr said I didn't have to cover it, I still did--just in case!lol

Elizabeth has it exactly right. All the tube forums extoll the button. If you clicked on the Roger Ebert blog about feeding tubes, he had pictures of the gtube he uses but he also had embedded a You Tube video of a young man changing his own button.

The buttons do have to be "measured" unlike the tube. They appear to be much more convenient but the devil is in the details. The button has an anti-reflux valve in it so you need to use a special connector that "locks and twists open" the valve. No matter how big your button or tube is, the valve is only about 10 to 12 FR. You cannot use the mickey button without that special connector.
I wanted one at first due to all the raves, but the doctors at my CCC dissuaded me for two reasons: (1) I grind up 6 different pills a day to put down my feeding tube and they felt they would clog the anti reflux valve (2) they claim they have to replace the button every three months due to reflux valve failure while the tube lasts 6 months.
If you go to the button, please keep us posted. Almost all the children use only the button as otherwise they end up pulling out the tube. On my gtube boards, the adults all use a G tube and not a button based on their doctors recommendations with one exception. I like the extra security of being able to use the tube without the extensions if I had to since it just has a little plastic closure like on a beach ball so there is really nothing to clog and the few times pieces of pill stuck, you can see it in the plastic and easily flush it. But I have been seriously thinking of the button
If you try it, please keep us posted.
Charm

Elizabeth! I like the sound of being able to swim with the Mic-Key. Although this is my third time around with the PEG I've always had it out by summer. I've been wondering how to handle swimming with it.

I think I'm going to put up a stink to get a button (in spite of the issues raised by Charm - although I'm sure they'll come back and bite me in the ass, uh I mean stomach). You'd think they'd be able to manufacture an adult size version! What's with that!!?? If it worked fairly easily who wouldn't want it!? Hmm, maybe there's an investment opportunity there...

I'll keep you guys posted on my adventure.

David

David

Good for you. Bear in mind that my doctors do NOT put in very many buttons at all but lots of tubes, so as fellow human beings, they are comfortable with the familiar. I think that is the reason why everyone does not get a button, most all of us just go at first with what the doctor recommends, and they all know tubes. Don't forget, nobody whether a child or adult can start out at first with a button, everybody has to start with a tube which lets the stoma form. Plus this is not an irrevocable decision, you can always go back to the tube if you don't like the button.
The size of the hole in the child's stomach and the adult is the same whether it's a button or tube, so I don't see any investment opportunities. Plus a lot of ideas you may have are already on the market or home made. here is a link to some of them Oley bright ideas
Last but not least, you can swim with a tube. Our own ChristineB has gone swimming and she has a combo G and J tube.
I'm heading out to the pool this month myself.
Keep up that adventurous spirit and I may be joining the button brigade myself
Charm

David,

My husband has the Mic-key. The intervention radiologist didn�t give him a choice and we didn't know there were other types. No trouble apart from when it was first put in; the first one was too short and a longer one had to be put in (pain so bad that Tim could not stand up straight and had to use a wheelchair to get across the hospital to the radiology unit) but this can happen with the other tubes, too. It�s the only feeding tube Tim has had apart from the one up his nose right after the jaw replacement.

It was put in almost a year ago. None of the literature that came with it says to replace it in six months. Crushed pills are not a problem, but blender liquefied food might be. We�ve never tried. The only pills that caused a problem were Prevacid, ironically from the GI doctor who did a recent dilatation. The time release balls clump. Also, be sure to tell the pharmacist about the tube, because gel caps can�t be used.

It has never leaked at all. It is flush to the skin. If given a choice, I would recommend you go with it.

I have a J/G tube which works for me. In fact today I went to have it replaced. It lasts anywhere from 2 - 4 months before I need a new one. I like how I have a choice of 2 ports, one into my stomach and the other one goes in right past the stomach.

I went swimming against my doctors and nurses orders. The first couple times I swam, I wrapped Glad cling wrap around my mid section so water wouldnt get in. It worked ok but didnt block the water completely. So whenever I wanted to swim, I would just go without the wrap and take a couple quick laps.

Thanks Susan. This is good news. I'm calling my gastroenterologist today to see about getting one!

Slash

Maybe it's an interventional radiology thing as the IR botched my first tube also. Does your husband uses the pump, gravity bag or syringes to put food down his tube ? I'm wondering if that makes any difference in how long a tube or button lasts.
Charm

David1

First, a belated welcome back to OCF. I hope you grace us with some of the clever wordplay and insights you put in your blog. You are luckt to be able to go to a gastro doc for your tube or button. I wish I could. So far I've gone to three different gastro docs and all three refused to change my tube saying that it could only be done in interventional radiology since it is not a PEG. ( worse, this put the kibosh on my efforts to get my wife to change it like in the You tube videos)
Ironic, I always hated PE in school and now the fact that my G tube was not PE (percutaneous endoscopic), really limits my options to just major hospitals (some small ones don't have an IR)for what is really just a routine procedure that thousands of mothers/caregivers do every day at home.
Hope you stay part of the OCF forum, you are a good writer At least let us know how your quest for the button turns out
Charm.

Thanks Charm. I appreciate your support!

Hi David,

I've had a mic-key button for the last 8 1/2 years, six months after the initial tube was placed. I swear by it! It gives me complete mobility. I am 59 years and very active, exercising daily and moving about all through the day. I don'tr even notice the mic-key most of the time. It's easy to clean around it - I do it once a day in the shower. One time in 8 years I had a granulation issue because the length was too short and we changed it to the proper length. You need to be measured for the proper French thickness and the length. Thickness can be anywhere from 8FF to 24FF. Mine is 20FF. I recommend going with a larger size especially if your doing syringe feedings. Length can be anywhere from perhaps 3cm to 5.5cm. Mine is 5.0cm. It all depends on the thickness of your stomach wall - thus the need to measure. Gastro docs have a measuring device.

Someone posted that mic-keys are mostly for children. I'm pretty sure they are for children and adults alike. I'm on Medicare Disability and Medicare pays for a new mic-key every three months. After a while the mic-key does start to discolor and sometimes will leak if it's worn out. I change mine no matter what after 3 months. I've heard of mic-keys lasting as long as nine months but that's probably an exception. I change it myself, it's very easy to do in about 5-10 minutes.

I've seen other posts about meds clogging the extensions. I crush my pill meds using a pestle, add water in a shot glass and stir thoroughly. Capsules I open up and do the same thing. If I try to do a lot of meds it clogs more easily but otherwise it normally doesn't. A trick I use is to leave some air in the syringe, shake the meds right before plunging the syringe and it goes right in most of the time. It it does clog, I pull back on the syringe and try again until it goes in. It works most of the time.

I exclusively "eat" four meals a day made from fresh unprocessed food and don't ever have a problem putting it through. Sometimes I may have to add water to thin it but otherwise it works fine.

I think you'll be glad you switched to a mic-key if you do it. It makes quality of life so much better.

Blessings,

Jesse

[quote=DYM] It it does clog, I pull back on the syringe and try again until it goes in. It works most of the time.

[/quote]


If anyone has a J/G tube DO NOT EVER pull back on the syringe!!! This will cause the balloon to deflate and it could pull the tube out from your gasto/stomach areas. Never even pull back on the syringe to check for residual when using the J?G tube. You do not want to have this happen as this type of feeding tube cannot simply be slid right back in. It is held in place not only by the balloon but also stitches. I have mine changed every 2 - 4 months as it wears out.

Jesse,

Thanks for note. I am even more motivated! My procedure to get the button is in an hour. Can't wait. Were you shown how to change it yourself or did you figure it out?

David

PS I'd love to know more about your unprocessed meals.

Hi David,

I hope all went well with your mic-key button placement. I was told how to replace it by a nurse at Mayo Clinic Rochester where I had it placed. As with anything until you do it yourself you don't fully know how it's going to work. The first couple times I was nervous but it was an easy process. I make sure to change it on an empty stomach and I lie flat. I use distilled water to fill the balloon and always test the new mic-key to be sure there are no leaks in the balloon. I deflate the existing one, pull it out (it should slide out easily). I use k-y gel around the new one so it slides in easy, inflate the balloon (I use 5cc of water) and it's good to go. I change mine every three months whether it needs it or not since Medicare pays for a new one every three months.

I knew from day one that I did not want to live on canned formulas. I am an active male who exercises 5x week. I saw no reason why I couldn't blend food and put it through the tube (this was before I knew about forums like this). So I started experimenting and over the years I developed over 100 Zone recipes made almost entirely from fresh unprocessed foods - in other words fresh veggies, fruits, whole grains, whole nuts, good fats like virgin olive oil, and good protein like farm raised poultry and wild caught fish. Food as close to being from the farm to the table without preservatives, additives, sugar, and whatever else they put in a lot of processed foods. I've maintained my weight, remain active and overall feel very healthy despite the numerous side effects I have.

I felt a need to share with other tubefeeders so I created www.drinkyourmeals.com which not only has the recipes but enables you to create your own recipes and menu plans among many other useful tools. It is free to all tubefeeders. Starting June 1 once a month Drink Your Meals is giving away a free Vitamix to a tubefeeder in financial need (send a request with your story to [email protected] to be considered). In my opinion a Vitamix is a must have kitchen tool for any tubefeeder doing blended meals. It breaks my heart when I hear about a tubefeeder or tubefeeder's family who can't do real food because they can't afford a Vitamix. In my opinion there is no better way to good health than "eating" real healthy food.

Blessings,

Jesse

Hey dim - how much is a vita mix?

Cheryl --

This thread started by Charm notes that oral cancer patients can get a medical discount on the Vitamix, making the cost around $300. I expect he'd have information on how that works.

As Leslie notes, I did find Vitamix's medical discount program worked out very well for me. While the contact information is readily available and routinely repeated on all the blenderized diet forums now, the OCF forum has always been a one stop information resource. I thought I had posted this information before but couldn't find it myself so here it is:
Send an email to
Ms. Sandy Ventimiglia
[email protected]
that spells out you have a gtube and oral cancer and give your home phone number and she usually calls you.
I had my doctor write a "prescription" for the vitamix - saying i needed it for my gtube but posters on the other forum say Sandy takes other medical documentation. I just scanned it in and sent it as an attachment reply email to Sandy along with my address for shipping. With tax & shipping,it came to $314
Please remember, OCF does not endorse Vitamix nor recommend it - I'm just a fan, and I see from Jesse's website, he is also.

David

so how did the Mickey button go? I even checked your blog in case you posted there instead of OCF, but nada.
I want to try one but have to learn how to change it myself since even after insurance, it still costs me $200 a visit out of my pocket each time the doctors change my tube. With the G tube, it's only twice a year, but everything I have read on all the forums supports Jesse's practice of changing the button every three months, even the MicKey web site. 4 times a year means it'd be $800 a year cost instead of $400.
But back to you: what's your first impression? Easy to use those clip on tubes? No problems with the anti reflux valve?
Please don't keep me in suspense
Charm

Thanks I was considering donating the funds for one or part of one that's all...

Hi Cheryl,

The standard cost for a Vitamix 5200 is $449.00. Vitamix does offer a medical discount which a later post has details about (I believe they are refurbished machines but do come with the great Vitamix seven year warranty).

I originally asked Vitamix if I could advertise the medical discount on my website and they said no. All I can offer is full price with free shipping if it's bought via my website. I have put another request into Vitamix to allow me to advertise the medical discount and I'm waiting to hear from them.

In any event I have moved forward with our monthly giveaway of a free Vitamix. I'm happy to say a mother with a young child is our June recipient. Anyone reading this post can submit their request for the monthly Vitamix giveaway to [email protected].

Blessings,

Jesse

Well I wanted to donate $200 towards one would that help?

Hi Cheryl,

That's so kind of you to offer to donate $200 towards a Vitamix for a tubefeeder in need. That definitely helps! It will enable me to give a second Vitamix away this month. You can go to the Drink Your Meals registration page and make a one time donation; or you can make your donation via Paypal; or you can send a check. You will definitely put a smile on someone's face and enable them to eat real food instead of the canned formulas.

Blessings,

Jesse