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Who needs surgeons anyway

Part 2 of the AMT MiniOne button won't go back in saga:

Recap: last night she accidentally pulled her G tube out (16fr 1.7cm AMT MiniOne button) and I tried repeatedly with every trick I could think of and couldn't get it back in. To avoid hospitalization & emergency surgery, I put an old yucky but mostly functional MicKey button in to keep the stoma open. I called the on-call GI after trying again unsuccessfully to get it back in and she said to wait & call the surgeon's office in the morning.

We used the gross old MicKey button for her last feed of the night & her night meds and then this morning I decided to give it one more try before I called the surgeon's office. I remembered that I had a tiny tube of lidocaine cream from one of our hospital stays so I decided to pull the MicKey out, slather the scar tissue & surrounding skin with lidocaine cream, and put the tube back for 20 minutes while the cream took effect. I had Raya lay down and told her I was going to take out her tubie and put medicine on her tummy and then put the tube back in. She was okay when I took it out and okay when I put the medicine on it, but she had a meltdown when I tried to put it back in. It slips right in but she was freaked out from all the drama last night. When I finally got the MicKey back in, I decided to forget about trying to get the MiniOne back in and just called the surgeon's office.

The person who answered transferred me to the medical assistant that works with the two surgeons that have seen Raya before, Dr. G and Dr. A. We had our initial G tube consult with Dr. G but then she was out of town so Dr. A ended up doing the surgery. I explained to the MA that I've never had a problem getting the AMT button back in before but that no matter what I try, it would NOT go in. She said, "Ok, let me see what Dr. G has available on her schedule and you can bring the button in and she'll put it back in." I told her that unless Dr. G could dilate the stoma (you know, with the ridiculously thick scar tissue around it) it wasn't going to go in. She was rather snippy with me and told me that Dr. G had been doing this for a long time and she can always get them back in. I told her that I had been doing this with my daughter's stoma for 2 years now and that if I can't get it in, she won't be able to either unless she can dilate the stoma, which was the whole reason I was even calling the surgeon's office. She said, "Well, Dr. G has been doing this for 20 years and she can ALWAYS get them back in. She uses a Q tip to keep the tube straight and she always gets them in. That's why she prefers the MicKey over the MiniOne, the MicKey is tapered and it's easier to get it in." Oh, you mean like I have done every friggin' time I tried to get it in? I'm not stupid, I've done all the same things the doctor will do to get it in.

I asked her if they would be able to use any kind of sedative or pain meds in the office to help Raya relax and help with the pain (because HELLO, we're stretching the hole in her stomach) and she said they won't do any of that in the office and that they would probably either force the tube in or put in a smaller French size. I told her I don't WANT a smaller French size, nor do I want to go back to a MicKey (because, after all, that's what the SURGEON prefers, who cares what's better for Raya.) She said if I wante Raya to get pain killers or sedatives, that I'd need to just take her to the ER and have them put the old tube back in. If I had wanted to spend hours in the ER, I could have done that last night but the hospital doesn't stock AMT buttons and I didn't know whether or not they could even legally put a used tube back in anyway, so I didn't. At that point, I knew it was pointless to try and have an intelligent dicussion with this person so I just said, "Whatever. What does she have available next week?" She said, "Um, nothing. I'm going to put you on hold while I get authorization from the scheduler to add you to the schedule."

SO I waited for about 5 minutes and then the scheduler (who was MUCH nicer and not rude and snippy like the MA) picked up. This is where it gets even more fun. She started talking about Dr. A's schedule and how he doesn't have anything available until October 2nd (as in 18 days from now) because he's away at conferences. I asked her if we could just see Dr. G instead since that's what the MA had been yapping talking about anyway but she said that technically, Raya is Dr. A's patient since he's the one that did her surgery. I DON'T CARE who did her surgery 2 years ago! I care who can see her NOW! When she said October 2nd, I laughed. I explained again that at the time being, we were getting by with an old, dirty, used MicKey button from our emergency kit but sure, we'll wait 3 weeks to be seen by a surgeon who isn't going to do anything any different than I've already been doing and won't use anything to numb her or relax her while he does it. I tried to keep the snark out of my voice but I was really feeling frustrated and angry at that point. She said that rather than schedule us that far out, she would put us on the cancellation list in case he has any cancellations next week. I told her that was fine and we hung up. Then I cried for a few minutes because I knew that I had 2 choices:
1. Wait 3 weeks and let the surgeon force the tube back in by whatever means necessary with no pain meds or sedation.
2. Be the bad guy and do it myself.

(and because we're moving in 13 days and someone was coming to look at the house at noon and it's like a nuclear disaster area right now) Both choices sucked. I hate having to do things to her that I know hurt her, but even more than that, I hate the idea of having to let people who don't know her and obviously don't care about her (given the conversation with the surgeon's office) do it. At least I know I love her, and so does she. I emailed the GI doctor (because I was in no shape to talk to anybody at her office & she's out of the office on Fridays anyway) and explained what had happened and asked her what I should do. Then I waited a little while until I had cooled off a bit and my sad frustration had morphed into pissed off Tubie Momma on a warpath kind of energy instead. 

I told her that we were going to try one more time to get her good tubie back in. She grabbed her stomach and said, "No, Mommy! No take it out! Don't hurt me!" I explained to her the best I could that we needed to try again because if Mommy couldn't get it in, then a doctor would have to get it in and that would hurt too. She wouldn't even let me touch the MicKey to pull it out after I had deflated the balloon so I grabbed her hand that was holding onto it, counted to 3, and pulled it out with her hand. She started squirming and crying and saying, "Owie! Don't hurt me! Don't hurt me!" and covering the hole so I couldn't get the KY jelly on it. I gooped up the tube really well and grabbed both of her hands with one of mine. Then she started kicking me and twisted over onto her side, so I had to straddle her and hold her body still with my knees while I used my other arm to hold her hands out of the way while she kept screaming. Then I gave the G tube a good hard push, then another, and another, and finally it popped in. I hurried to reinflate the balloon so she wouldn't make it come out again and then cleaned off her tummy, hugged her, and told her I was sorry for hurting her tummy. Then we both got over it and went on with our day.

I'm glad I got it to go back in but that was ridiculous. Don't get me wrong, there's nothing wrong with MicKey buttons, but the AMT Mini One just works better for Raya so we need to stick to that button. We canNOT do this again though. I can't help but wonder how things would have been different if I hadn't told them that I had a MicKey button in the stoma. They sure as heck wouldn't have told me they couldn't get us in until October 2nd.

I sure do love this girl but some days I really hate feeding tube drama.

(And to be clear, I'm not suggesting that anybody else do things the way I did.)


  1. I would have totally come over to help. Did you check the miniOne to see if he had a slow drip (leak)? Tyler's had only been in a few weeks before it slowly leaked/starting coming out. Luckily I had been vigilantly checking every day and caught it before he could pull it out.


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