Not There Yet

Despite our collective hopes, yesterday didn’t go as planned. Normally, I would start with the good news, but I am still working on processing the bad news, so you will have to wait for the good stuff.

Procedurally, yesterday went fine. Well, except for the being rushed out of recovery by a nurse before I got to talk to the doctor again. But given how hard this guy is to reach, we insisted we see him before we left, so she shoved us into a closet (seriously) to wait.

Eventually the doctor came in, confirmed that yes, my original J tube had a clog (this was the reason for the evening call on 1/26) but that everything else looked good. As planned I called the stoma nurse on her day off, she sent me to another part of the hospital where another nurse took me into the bathroom (it wasn’t a clinic day, so it was either her cramped office or the bathroom) showed me how to apply the disk (it isn’t really a disk, more of a 4″x 4″ thick sticker) and sent me home with all of the materials I needed to do it on my own. Except for the lack of space, this is how I honestly expected my entire tube experience to go. It was a nice change.

But I digress. When we got home at about 4pm, having not fed or had any liquid since 10pm the previous night, I set out to flush my tube and set up a feed. Except that I couldn’t. First off there was the logistical challenge that the new tube has a different kind of connector than the syringes I have, so even with the adapter the hospital sent me home with, it still required a fair amount of jerryrigging. But even when we got that worked out, I could push the water in the tube and then it would just come out. I was also feeling some new and very uncomfortable pressure in my jejunum and I had to vent my J tube for the first time in…ever.

I called the on call doctor who gratefully completely agreed that there was no point in sending me to the ER because the issue was with the J tube which they blanketly refuse to deal with. She called my doctor who told me to come back into Endoscopy today and he would see me between patients. If I can’t flush, I can’t feed, so no nutrition for me. Instead I spent the evening trying to hydrate and get some electrolytes into me.

This is where we get into the good news. The disk, something that I was dubious would work, has worked wonders. I didn’t wake up in pain any time during the middle of the night. While the inflamed tissue is still present, the pain is not. And presumably, that will allow the tissue to heal over time. The moral of the story? Trust nurses. They get the work done. Also, they deserve better wages, better nurse to patient ratios and more reasonable working hours. Nurses rock.

But all was not well. I woke up with a whole new type of queasiness with which I had not yet encountered. This was a deep pressure from my jejunum. I staggered into the bathroom and desperately vented my J tube. So just as I got the stoma pain under the control, I got this misery to replace it.

Impressively, we didn’t have to wait unreasonably long for the doctor to see me. So much faster than the ER. He tried all of the same things I did with the same results. Except that he tried to convince me that it would work if I just pushed in a whole bunch of air to push the liquid through. But, after making me completely uncomfortable (which is a euphemism for almost being in tears) the water just came back up.

He tried pushing through a guidewire and that didn’t work. Then he just shrugged at me and said that he didn’t know what to tell me. I reminded him that I could not feed like this. He suggested that I try feeding into my G tube. I reminded him that if I could feed into my G tube, I wouldn’t have a G-J tube.

After repeating a few times that he didn’t know what to tell me, he said that he would just have to go back to the lesser, leaky tube. Like this fancier one was the better option. And it may be, but only if it is functional. Which is basically what I told him. He then suggested that I might need to get a separate J tube (which would mean managing two tubes and two stomata (the plural of stoma), which seemed like a huge leap to me considering that my previous tube was perfectly functional. I told him that I was good getting the old style tube back. He said his schedule was booked and that the best he could tell me was to go through the ER. Until I reminded him that a) the last time he told me that I got sent home after they did nothing. and b) since it is a J tube and the ER doesn’t deal with J tubes, they were just going to send me back up to him.

He managed to find an opening for me Thursday morning where, almost as an afterthought, he mentioned that he would first see if he could figure out what the deal is with the J arm of this tube and if that didn’t work, put the old style tube back in.

For those following at home that means nothing resembling adequate nutrition from Sunday at 10pm until some time Thursday. I am working hard on pushing in electrolytes and hydration orally.

And because life was still too easy, Xena Malka has had a weepy eye for a couple of days. It has gotten worse and now she care barely keep that eye open. So David is taking her to the vet right now. Because as he says, that is what he does, takes his girls to the hospital.