Now a member of the BUTTON CLUB!

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indigosd

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Joined
Jun 22, 2009
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1,805
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Lost a loved one
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07/2009
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Yesterday Web had his "l-o-n-g tube" replaced with a Bard Button. So far he is :D! I medicated him at home with one Xanax 30 min before the procedure and they gave him MS IM at the Clinic [per my insistence when we made the appt]. He was very comfortable and said that the procedure was a breeze. He loves his button! Why? He doesn't have to wind the tube up anymore, he doesn't have to feel the long tube pulling on his tummy, he doesn't have to look at his stomach contents in the tube anymore, he doesn't have to have the tube bulge showing under his clothing, he doesn't feel so obviously sick anymore when he looks in the mirror. Great for his self image and for his self esteem! I had requested a MicKey...this is a little to long and they will reasses it in May, if this one doesn't work the way we want, I will insist on the MicKey! This made his day! Yippeee!
To celebrate we used it to give him a glass of Chardonnay :wink::grin:
 
Love the Chardonnay bit. ;)
 
Wonderful, wonderful, wonderful..........
They make the CHardonnay just down the road from me at Moissac........Acres and acres of chardonnay vines
 
I'm so glad he likes being a "button boy." What a relief to see his esteem take a leap. That scene is long overdue. :D
 
Kay Marie, Did it hurt? Serenede said it hurt like !@#. We have an appt next week, and Les is reluctant to change it now, after all the complaining. Go figure! How long did it take? Details PLEASE! HUGS Lori
 
Read my post again Lori. No, he said it was a breeze. He is a little sore today but nothing serious-not even a tylenol. Go for it!
 
Lori,
Yes it hurt like all heck, but I had no medications and took it like a big girl and survived. Tell Les to put on his big boy pants and do it He will be glad he did.
I love my new button.

Web welcome to the button club, enjoy the freedom of the tube=)

Judy
 
I get so "unsettled" doing the tube thing. Y'all don't yell at me. Would the button be easier to deal with? The clamp keeps coming loose on the tube and I forget to check before flushing and that's a real thriller.
 
what is a mickey
 
Its mic-key a different type of tube thingy. HUGS Lori
 
Judy, what type of "button" do you have? CJ, sooooo much easier! They have a back flow valve so when you open the button NOTHING comes out! There is a little extension set that you plug into the button with the 60cc syringe attached for bolus feedings and that does have a clamp that you need to use-or a different attachment if you are doing a continuous feed. The button is smaller than the long tube. We have not tried our Vitamix blended food and I question if it will be able to get through that little tube. I would think that it would be difficult for a PALS to use independently as it takes fine motor skills but fabulous for a CALS. The great thing is that it is SMALL and discreet and doesn't make you feel so disabled :] I remembered reading [Judy or someone else] about the pain involved with a PEG change so I DEMANDED pain medication for him prior to the procedure and gave him a Xanax at home 30 minutes before the procedure. I do not believe in pain and think it is totally unnecessary. :] The procedure itself was over in minutes! You do need to be "measured" for the size of the button before you get one. That involves the Dr. sticking what looks like a little tiny plastic pipe wrench into the stoma alongside the long tube. They need to know the exact depth so they can insert the correct length. Web currently has a Bard Button 18 French x 2.4cm. I had researched Johnson & Johnson Mic-Key Buttons and that is what I had requested. They brought the Bard but it is a little to long so we may switch it out in May. I am going to research the different types again. If I think the Mic-Key is a better option for us I will just tell them to replace with it. :] Always remember that this is your body, your life, your choice, no need EVER for pain and tell them what you need or want. They work for you :]
 
Good for you, Web, “ L'chai-im!”
 
As of yesterday, Web is no longer a member of the Button Club :cry: It was inserted on Tuesday by the Surgeon as a Out Pt procedure as out little local hospital. He mentioned and we noticed that it was sticking out a little more than it was suppose to be. Web did not complain of pain that night. Wednesday morning complained of "burning" with the flush. BURNING? hmmmm.... It flushed OK. He did the flush Wednesday evening as I was sound asleep. Thursday morning I get him ready to flush it, pull up his t shirt and :shock: He has a raised, red, hot area about 4 inches in diameter around the button! I palpate the red area and I can palpate a hard area above it about 2 inches in diameter and he is in Pain! I flush it with about 2 cc's of water and he is HOWLING! :shock: Not only that but I can see those 2 cc's that I flushed with coming out around the stoma! I call the surgeon's nurse and tell her what is going on and suggest that we go to the big Hospital [60 miles away where they work] and have Radiology inject dye to check that it is placed correctly. Off we go. First stop Radiology and guess what...they don't have the specialized attachment tubing for the button to flush it with the dye! WTF! :twisted: The Surgeon brought the button from their Central Supply! I might also add that being the careful Nurse that I am, I brought home the container that the Bard Button came in along with the attachment tubing. Guess what? It had expired in April of 2009 and that is what they inserted into my husband! :twisted: I did not notice that until Tuesday evening and Web was so pleased with the button that I felt it was better to not say anything. NOW I am livid. I brought a copy of the front of the container that shows it is outdated and give it to the Surgeon's Nurse. After 20 min of arguing with Radiology and Endoscopy they finally find a extension tubing that will work. Guess what? It is in the wall of his abdominal muscle with just a tiny bit into his stomach! Next stop the Endoscopy Center. Surgeon comes in and tells us that a "Specialized Dr" will Fix it but we will need to go to Same Day Surgery. Off we go. IV, IV Ancef and off he goes to Surgery. An hour later he is done and I am told that it was advanced and that he is good to go! Hooray. It is now 7 PM and we have been at this since 9 AM. I bundle him up and off we go for the hour ride home after a stop at Walmart to get the antibiotic that he will need to be on for the next 7 days. Exhausted but happy. Web has had nothing to eat all day and basically no fluids other than the water they used to flush it in surgery. He refuses to eat. There is a compression dressing on the site that i am not suppose to remove until Friday morning. We go to bed. Friday morning-he wakes up at 7:40 AM [very early for him] and complains of abdominal pain. I take off the dressing to assess it and :shock: it is sticking out further than before and the red area is larger and hotter! I try to flush it as he howls that it burns only to see that all of the water is running out! OMG Call the Surgeon's Nurse again and the Surgeon is out of town! She phones me back and tells us to come back to same day Surgery AGAIN! Off we go...not happy anymore. Same procedure again-more IV antibiotic's this time actually meet with the Anesthetist and I tell the Special Procedure Dr. from yesterday that today they are keeping him overnight for observation to make sure that it is all ok. Off Web goes again into surgery. 2 hours later he is back and now he has a frigging garden hose that looks like a foley catheter jutting out of his stomach!:shock::-( His color is pasty and he is literally writhing in pain. I make them call back the Surgeon. He comes in and I said, "MEDICATE HIM NOW" and make arrangements to keep him over night. This is not normal and I am not taking him home when he is in this much pain. It took 3 mg of IV Dilaudid to get his pain from a 10 to a 2! They then tell me that the QA Department said that he can not be admitted because he does not fit the Fing criteria! OMG I told the Surgeon to find out what the critera was and make it happen. No luck. I said fine. I want a COPY OF ALL OF HIS MEDICAL RECORDS ASAP. The Nursing Supervisor comes down and asks me "Why"-now they are thinking OMG she is going to sue. They are correct of course. I feel a Medical Malpractice Suit looming in my near future. I looked at her and said, "I keep a copy of all of his records." I left at 7:30 PM with a husband that could barely transfer so that I could stop again at Walmart to pick up Dilaudid tablets to try and keep his pain under control at home and then began the hour long drive back home AGAIN! I get home at 9:30 PM barely get him into the house and his teeth start chattering and he breaks out in a cold icy sweat and tells me he is going to vomit! I get him changed and into bed and he falls alseep. Up at midnight vomiting his brains out and drenched in cold sweat and complaining of his head killing him. OMG OMG I can't give him anything for pain due to the vomiting. Put him back to bed and sit up all night beside him. He seems to be resting but OMG. He went from a manageable 18 fr soft long tube to a button to a hard short [8 inches] white jutting straight out 22 fr 3 port tube! No food or fluids for 48 hours and pain of a 10 on the pain scale. 3 invasive procedures in 4 days- OMG I just am sick.
 
Oh KayMarie! How awful! Prayers for CLARITY AND COURAGE to tackle the healthcare beast and fight for your husband.

Prayers for PEACE and COMFORT for Web. Try to get some rest while he's resting...you're going to need it!
Love you!
Mel
 
Why is it that such a supposedly simple procedure turns into a disaster?!? Who can you trust anymore to take good care of our pALS?

Maybe we should move to Canada? Seems like our Canadian friends have better luck going through this stuff than those of us in the U S of A.

Hope y'all both fare better and soon!
 
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