Mic-key tube done - but...

[Phil M]

Yall have any idea how they put in the long tube one if you chose to keep the same as the original? That was the worlds longest sentence! lol

 

[BarryG]

Phil, I was told by the gastro doc who yanked (in the nicest possible way) out my original tube that the only way to replace the rubber mushroom type with the same was another endoscopic operation. Not something that I wanted and because of reduced breathing they wouldn't do it even if I did.

 

[brooksea]

Back to the syringe problem! After reading all the fine print on the instruction brochure, that I swiped from the ER that came with the tube, it looks as if this tube is for PUMP feeding! :x

I have scoured the web and found that you have to use a Luer Lock Tip syringe! This is the syringe compatible with the "Kangaroo All Silicone Gastrostomy Feeding Tube With Y-Port."

I have a call in to a Gastroenterologist in Athens that will, hopefully, be able to change this thing out! Waiting on the nurse to call back!

Now, how shall I draft my letter to Emory about their (once again) wonderful handiwork? HMMM...

Phil - I know when they put the different brand of long tube (as described above) in at the ER, they inserted a balloon type that is filled with a gel. No pain meds til done! Don't know about the "original" being done again. Talk about gnashing of teeth! I had to walk down the hallway and could still hear my husband yelling! He feels like he's been to a redneck "knife and gun" joint and got in a fight with Bubba! (no offense to any Bubbas, I have one in my family! LOL)

 

[lms9258]

Dear CJ,

You've done a fine job of explaining everything you and your husband have been subjected to, right here on this thread. Just tweak all of your posts a bit, and voila!-- you've got yourself a draft to Emory. Don't forget to send a copy (cc), to all involved in this debacle. Hope you start having better luck--take care.

Laura

 

[BarryG]

CJ, I woke up in the middle of the night thinking "I bet that tube is made for a syringe with a threaded end". I never thought of a pump but that would make sense for a hospital so they could connect it and not worry about it coming loose. Glad you got it figured out

 

[brooksea]

Try this again! LOL! I just typed my post and ended it with "God has a sick sense of humour! I'm not laughing!" Then the power went out! LMAO Lost my post.

Anyway, called the Gastro's office back and he won't do the procedure! Says it has to be done in a hospital!?! Going to see hubby's GP tomorrow and will discuss the tube issue with her. We are going to say buh-bye to Emory for his care and entrust it to her. She indicated before that she would be happy to take on his care, but would not deal with Emory, now I know why.

Maybe y'all should pray...

Ahh, Barry! Thank you for thinking of us!

 

[sadiemae]

Les saw a local Gastro, and they did it in the hospital. This is the same place I went for my colonoscopy. You will probably have to have your Doc write a referral to a gastro, go see him, then schedule the procedure at the hospital. They will probably want you to be PATIENT and wait a week or so. Be ready for this, and be firm, get it done NOW. This is so ridiculous that he has to be under so much stress from this.

 

[Katie C]

CJ.. you poor thing! I think you're keeping your sense of humor amazingly well! OK, I agree that by tweaking your posts here you have your letter outlined. I have one more STRONG suggestion... when you're deciding who to copy with the letter (Starting with everyone on the Emory board of trustees!) .. make sure you include whatever local tv station has the best record with consumer action stories.

 

[brooksea]

My dad is OLD Air Force Retired - Vietnam era (thanks for serving Daddy)! LOL He called me tonight and I described the tube to him and he knew exactly what I was talking about! Luer Lock! He described what I would have to do, with what I don't have. Golly, feeding tube technology hasn't changed much in YEARS!

So, in the mean time...the tube that has been placed by the ER physician has moved, like an inch out. Sigh! "I'll think about that tomorrow!"

 

[t34gib]

This is just outrageous. To have to go through all this for something that should be so simple. I had my long tube replaced with a mini-button and it was done so quickly I did not even realize it had been done. My husband was in the room and was also amazed at how quick and easy it was done. I did not feel a thing. And, the Dr. did not let us leave until he was sure I could manipulate the tube i had to attach to feed with. I cannot believe you can go to a place such as Emory and get that kind of treatment. It is absolutely apalling. I can't believe that we have to have one of our own go through such a mess. I am so sorry and you can add how easy mine was to your letter to Emory as an example of how it is supposed to be done. Tell them to call Mayo Clinic in Jacksonville, Fl to find out how it should be done. lol
NancyS

 

[brooksea]

Thx Nancy!

 

[brooksea]

Waiting on appointment with a surgeon. GP was of no help with determining what syringe I need for flushing or feeding. She brought a syringe in and gave it to me to try and it didn't work. I dug further on the internet and found the manufacturer's site with patient information. It IS a tube for "bag" feeding and the side port is for flushing.

He is so pissed!

I haven't gotten with Emory yet, as I am waiting for my "self" to cool down! 8)

 

[Phil M]

I used to think we were lucky to be near Emory. They are really good at some things, but like you...I have had some pretty serious issues with them.

 

[brooksea]

Seeing surgeon tomorrow for consult. His nurse was very nice on the phone when I called and explained everything. Don't like the fact he uses the local hospital, though. But, I'm telling myself it couldn't be any worse than what he's been through!

 

[cris]

Am sending MANY prayers and Hugs your way! This is outrageous! I would also send a copy of your letter to the local newspapers! The community should know what kind of terrible treatment their hospitals are giving. There is NO reasoin anyone, let alone someone with ALS should have to go that!