I�m following up on a discussion thread from last summer about the mic-key.

Tim�s mic-key balloon finally sprang a leak after 15 months. Of course, it had to pop out at 7:30 on a Saturday morning. Why don�t these things ever happen at 10am on a Tuesday? We got our GI doc�s partner out of bed and he met us two hours later at the ER and put in a temporary tube until he could order a mic-key replacement.

While I was waiting for the doctor, I went on-line and watched the video about changing out the mic-key. It�s a very simple thing to do. The whole video was barely over five minutes. From now on, I am going to change them at home. The RO office that wrote the order for the food is adding a replacement tube to the order every three months. Since the GI doc charges tube changes as an out-patient procedure, our co-pay is $175. The mic-key can be bought through Amazon for less than that!

Tim hated the temporary tube. The extension hung down and had to be stuffed into his waistband. Since he jumps around a lot during lectures and was coughing from pneumonia, it would leak. It also didn�t fit his syringes for bolus feeding, would make a huge mess and feeding took over twice as long. He gets two new extension tubes each month for the mic-key, so they can�t get too gunky (and they�re easier to clean).

I don�t know why anyone who isn�t bedridden would ever not get a mic-key!

Susan

Susan

The primary reason why people get a tube instead of a button is that this is one area where adults have less choices than children. In fact, most adults have no real practical choice in the matter at all. Cancer patients get what the doctor is familiar with and that is a PEG tube. (although Tim is an exception according to your May post but even then his doctors did not give him a choice, did they?) Plus a tube does not have to be measured like a button. Last but not least, the majority of doctors have never even put in a button and who wants to be their first guinea pig.


You are very lucky in getting 15 months out of a button. Their projected life is 90 days which is why most insurance (even Medicare) covers a new one every three months. I'm on several tube feeding internet sites (Yahoo BD group, Syracuse list serve, etc) where periodically an adult pops up, especially at Veteran's Administration hospitals, who lament how hard it is to get a button and even when they push for, it often is mismeasured by the doctor and ends up painful until a correct size is found. Of course the mothers and caregivers on these thread all replace the button for the patient and not the child or patient themselves.

You are right on the money (literally) about replacing them yourself.I've held off getting a button until I could find a doctor who will write a prescription for my buttons as my co pay is about $200 so otherwise switching would run an extra $600 a year over the tube. I plan on getting a button in Dec, since in Sept when I went for a button, they discovered they had the wrong size and have to special order the right one.

I don't understand why his feeding would be any slower with a tube. In fact, my button will be slower than my 16FR tube since the anti-reflux valve in every size button is only 12FR.
I use a syringe exclusively and get four extension tubes a months.

Thanks for posting this. I needed the encouragement because I worry that my blenderized dinner of real food will clog that tiny anti-reflux valve in every button. I hope the instructions and website are exaggerating about having to clean it with a Q tip each time to clear it.


Charm

Today is the big Button day for me. In a few hours, I will go into the surgery room at Georgetown Hospital to get my Mic-Key button. I had to contact the head of the Interventional Radilogy dept to check if they had ordered the correct size from Sept and it turns out they did not. However to make up for it, he special ordered three sizes: 2.5". 3" and 3.5" all in 16FR so one of them should fit.
All of the mom's on the blenderized Diet listserv told me that they never had to clean out the anti reflux valve and several had me laughing out loud when they said they had to look up what one was despite using a button on their kids for years.
My wonderful caregiver wife is a little nervous about having to change it in three months but we will deal with that then.
That's assuming they even give me the necessary prescription to order it as they warned me they may want me to come back to have the button changed by them the first time.
No gastro or GI doc (and I've contacted 5 of them) will just change it due to malpractice insurance restrictions on treating patients who had fluoroscopic instead of endoscopic placement. So I've really had a PFG these three years
Thanks to slash and other OCF members who have ditched the pegtube for a button and encouraged me. It is a little unnerving that this will be the first time none of the 6 surgeons in IR have inserted a button, only tubes, but that bodes well for my wife to be able to do it too.
Charm

Best wishes today. Anxious to hear how it goes and what you think of it.
Kathy

Congrats Charm!!!! Im so happy for you! I know you wanted to get the button for a very long time. I cant wait to hear how you like the button as compared to having that darn tube hanging there. Im sure your wonderful sweetheart of a wife will be able to help you change it when the time comes. Please tell her I said hello. Best wishes with your surgery. Im waiting to hear all the detail

Awesome, Charm! Glad you are finally getting something you wanted for a long time! All this talk about the "Button" has made me imagine all kinds of pictures in my mind. Gonna have to Google it to see what's happening and how it is used. Hope everything has gone well today and you got the right size for a good fit. So - how was it?

Woo Hoo. It's been 24 hours since I had my Mic tube replaced with a Mic-Key button (low profile). Turns out that they had mismeasured me last time but luckily they had ordered three sizes and the 3.5cm worked. It was so nice to be able to go to the gym without wrapping an ace bandage across the tube hanging down. So far so good with syringing both my crushed pills and the Vitamix dinners.
I'm going to order some extra connectors online (I will use the OCF amazon link) since it only came with two and they don't last long. Next step is to get my medical supply house to start ordering them for me but I will have to get my ENT to give me a prescription.
The doctors would not let my wife into the OR to show her how to change it but they agreed that in three months, they will change the next one in the ready room bed so she can see it and then give me a script for the button replacement as long as I sign a legal waiver for them. They would prefer me to come back every three months to them, but it takes about 4 hours with parking and waiting and registration and the inevitable delay, etc plus my co pay is $200.
I did not realize the Mic Tube retails for $50 and lasts 6 months while the Mic key button retails for $150 and lasts 3 months until I started to shop online for the connectors
All my doctors were so discouraging about switching while all the on line forums of caregivers for children with tubes encouraged me. Sometimes you just have to listen to the patients and caregivers to get the real story.
Charm

I second your Woohoo! My mantra has always been "simplify". Boy is this change going to be good for you! So glad you are happy with the results!

So happy to hear how great everything worked out, Charm!! You are right about the value of getting the real story from the people with direct experience. When I Googled the Button, I saw such an endearing picture of a beautiful little child looking down at his Button. Hope everything continues to go just perfectly for you and your new Button.

Great news, Charm! Not having the hassle of bandaging the tube from flopping around, plus the continuous discomfort associated with the PEG would be terrific.

I will pass this information on to my friend. She also has a permanent feeding tube.

Congrats Charm!!!! Im so happy you are happy Glad it worked out like you wanted.