Tuesday, October 9, 2012

Farewell, MIC-KEY

The very good news is that weird pain I've been having for a year is gone. The G/J must have been hitting something that my body didn't like.

But in its wake, left the pain of the newly placed Abbott Flexiflo Lap J tube (I was wrong, it is not the MIC). The thing about the Abbott Flexiflo Lap J tube is that it doesn't stick out very far. With the post op T fasteners in it (they look like spikes) and a few stitches, when you go to kink it to put meds in (no clamp) it hurts. When you roll over, it hurts. With a laparoscopic abdominal procedure, the air they use to puff up your belly (hence why the bottom photo shows such a swollen tummy) puts pressure on your chest and shoulders, so sitting from a laying position is painful. Moving is painful.

But there were no complications. None. And so I am extremely grateful.

It's kinda hard, however, for me now with these two tubes sticking out of my stomach. Especially the G tube (also an Abbott tube) since it it very bulky. Both tubes have hard-to-conceal adapters that accept catheter tip syringes and adapters from feeding/drain bags. I DO like them for the fact that they grip tight and don't let things slide out -- these parts I dare say are made of a different material, not silicone.

The MIC-KEY button was kinda fun to show curious eyes. These I am less secure about so far (especially the J tube, although I am sure it will look much better when the T fasteners come out and the swelling comes down)

Having separate tubes has been amazing for my psychological health, as odd as that sounds. The constant trips to the bathroom to vomit may be a thing of the past. Instead of an about 8 french G port to drain from my MIC-KEY G/J, I have an 18 french, wide bore tube. More than double the size. And since my drainage is so thick, this tube drains everything. Since the trauma of the surgery, it's amazing how the drainage has changed in color and viscosity. I expect things to return to normal in about a week.

I had been struggling with whether I should get separate button tubes, and up to the last minute I was going to. But the more I thought about it, the less sense it made. Both tubes are accessed 24/7. The bolus extension for draining the G on the button tubes kink after a few days when they become stiff from the constant bile flow. The kinking was part of the reason I wasn't getting relief. The other reason is that the french size of the extensions is how much is allowed to flow in or out. With a long G tube it's (in my case an 18 FR) the same FR size all the way down, and the material is made to last longer, so there is no obnoxious kinking of the tube. You don't have to "babysit" it.

I am still having a fair amount of pain. Staff here has been wonderful to me. Yesterday my pain score hit a "10" -- which for me, a pain score of "10" means screaming, crying, non verbal. So someone came back to calm me down, reminded me that I needed to breathe through my nose (I was hyperventilating without realizing it), and they've been checking on me at regular intervals. Which is good because sometimes when my pain is an "8" I'm still crying, but it's a quiet kind of crying, but I can still talk, so someone just sits down with me to chat. One of the staff even cleaned my apartment for me yesterday. They aren't supposed to do that (I'm supposed to be able to participate in helping), but I've been sick for awhile and don't usually ask for help. I think this is their way of reaching out and telling me that they're here and they do care. (Plus, admittedly, the apartment needed some serious help).

I've been having some unexpected after effects that I didn't expect. Like crazy insomnia, but again, this is probably due to pain. Another is worsening volume intolerance. It's getting better, but the surgeon warned me this may happen in the beginning. She explained this may happen because she was placing the tube deep into the jejunum (due to reverse peristalsis). So getting up to goal feeding rate AND getting enough hydration AND my medications...hasn't happened yet, but we're only two days out of surgery. So this is to be expected.

The sad part that isn't so sad is that my cloth G or J tube pads don't fit under either of my tubes. My surgeon made sure they were snug so as to minimize leakage. Which is really good, but gosh those things were expensive. I wonder if another tubie girl would like them, even though they've been used (they've been washed in Tide, which is the only detergent I will use).

So all in all...yes. Two separate long tubes aren't as cute a one two in one button tube. But I feel TONS better. And really, that's all that matters.

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