Now a member of the BUTTON CLUB!

[handinhand]

Oh please tell Web i feel so bad.. My first thought is, Can't it be cut down so it is not sticking out ? I want my tube cut down. I hope it can be but it can be hidden pretty easiley... Oh this stupid desiease... I hate it and everything that goes along with it.... Hugs to the both of you, Linda

 

[BarryG]

That is why I have resisted having my tube replaced but it is going to have to happen soon. To all of those with a long tube, it will get shorter over time, mine started at about 16" inches long but because of the build up of hard material inside the tube near the end where I kink it to put the syringe in (no clamp on my tube) I have cut pieces off so that now it is only about 6 or 7 inches long. I would be very happy to have the very same tube as a replacement because even when it was long it was not really a problem and I don't care about stomach contents showing in a tube that nobody sees anyway. Nobody knows I have a tube unless I tell them or show them, unlike my avatar I have no pecs or abs to show off anyway!

I hope that they can do something for Web because us peggers have enough problems without more unnecessary embarrassment. I'm sure most health care types think that we should all be housebound and it is not their responsibility to make it possible for us to be as normal as we can be. Glad he is feeling better anyway!

 

[joelc]

Don't let it get too short before having it replaced. It makes it very difficult for the doctor to remove and might result in being put under while they take it out.

 

[LauraW]

Kay Marie,
I am just sick after reading what you both went through. Please do not let this go. It is not ok to be treated that way! What is wrong with those doctors and nurses! This just makes me sooooo angry. I have had my share of medical idiots but this just sounds like a nightmare. Hugs to you both and prayers that something good can come from it all!

 

[Ladyinn]

Kay Marie, sure sounds like you and Web have been thru the ringer since we last spoke. I sure hope he is feeling better and the crisis has passed. You sound like a perfect advocate so when you hang out the shingle let me know! Take care of each other. Diane

 

[t34gib]

I am so sorry for the problems others have had. I went to the Mayo to have mine changed from the long tube to the button. They know what they are doing and they do a lot of them. It was so easy it was ridiculous. My husband was going to leave the room but before either of us knew it the procedure was done. He had me try it and make sure fluids went in and that I could manage it and boom, that was it. Had radiation after that for saliva and it was the only thing that bothered me later. Drove home 3 hours and the soreness from the radiation kept getting worse and worse. I took some sleeping aids and slept all night. Had soreness for a few days from the radiation but never had a problem or soreness with the mini button. I love it. Dr. said I could go swimming just to cover it and that is very good as I live in Florida.
Nancy S

 

[indigosd]

Thank you all for your words of support, comfort and encouragement! Obviously he did have an infection in his abdominal wall [even though NO ONE checked him for it-Thank God I insisted on Iv antibiotics and coverage for home] as the hot redness has now disappeared. All I can say about the garden hose woody is that it works and we could put a cow through it without using the Vitamix! I am so angry that he had to endure all of that and went from the utter happiness with the "idea" of a button to the so obvious garden hose. I did call an attorney to see if we had any recourse [they put in a button with a DO NOT USE after 04/09] and all of the rest of it...I guess unless you die there is not much to be done...I am so battle weary and ANGRY that the people that are suppose to know what they are doing are only concerned about how much money they can rake in! I still do not understand why they replaced the button with the garden hose? Will call the Surgeon's office this morning when they open-sad to say that his office has never even phoned to check on Web. :[ Is that because they know that I would phone if I had problems? Is it that they are keeping a low profile because they know that they screwed up or is it that they simply don't give a damn? It is a nice day, sunshine-little wind and the Monkey's are warming up their wings!

 

[SavoringLife]

Wow, Kay, I am just now reading this thread -- so sorry to hear all you have been going through. Once again, you are my hero -- Web is lucky to have you on your side.

My husband, Jim, also got his original tube replaced with a Mic-Key last month. All went fine, (although there was a great deal of pain, I will insist on medication next time), and the site has stayed clean and dry. It's much better for all the reasons you mentioned.

But, we got some great advice from the endoscopy nurse that I'll pass on to everyone: she suggested ordering a back-up Mic-Key kit (that we store at our house) just in case something goes wrong and it has to be replaced in the ER or endoscopy center on short notice. She said the tubes that are stored in the ER are like garden hoses and are horrible -- just as you are experiencing yourself.

So, we took her advice and now have a complete, correctly-sized back-up Mic-Key kit ready to go just in case. (We waited 4 weeks after the procedure to order it so that insurance would cover it.)

 

[brooksea]

Kay Marie,

If I had a "doctor's" office call to check on my husband after a procedure, I would faint! LOL

 

[indigosd]

In the last decade, it is the PR thing to do to keep down lawsuits and it works! Our Dentist's office even calls the next day to see if everything is ok! Even if they do not care, it makes you feel like they did :]

 

[brooksea]

Ok, I admit the pediatrician called to check on our son. But, her best friend's mom has ALS, so I guess she has a special interest. Only I can't talk about that special interest without losing it...