Monday, February 24, 2014

Let's Do The Time Warp Again! What Exactly Happened?

I just realized something sort of late in the game (sorry).

I have no idea who all is reading this in all reality. I do know of who follows, but I don't really know who else is watching this story unfold out there across the internet, as I see one of my top traffic feeds now comr from Google itself...

...which means more than one has found this single small voice, and has decided they would like to listen. And I owe it to you guys out there to let you know what exactly happened that I went from G tube feeding to TPN dependence in a rather short amount of time.

Because the differences and level of function are huge.

G tube feeding was an experiment, so see if small volume feedings would work in my stomach since my J tube was pushed out of tract by my body (the closest thing to giving birth I will ever know...and the result was heartbreaking) and we really did not want to rush into another surgery. They do make G/J tubes, which is what I had in the very beginning of this blog: the tube goes through the stomach, but there is an "arm" that also reaches into the small bowel past the ligament of Treitz (or in English, really far down in the part of the small bowel call the jejunum). This gives the user both gastric and jejunal access. The reasoning is for people like me: those who need to drain their stomachs either sometimes or all the time, and feed formula and medication into the jejunum.

The problem with the G/J tube in my case was that "arm" would turn right around, grab hold and choke me: that stupid thing traveled BACKWARDS, and lodged itself in my throat.


Which is why we have to do have separate tubes.

I do poorly with surgery, and I had adhesions from so many procedures on my torso. Putting in a new J would mean a possible open procedure.

My J tube came out in July 2013. And in an open procedure, that the surgeon in clinical notes documented as taking "days" to place (because it did...but it was partly my fault in my sort of awake hours), my G tube was relocated and upsized to improve flow of gastric content in and out, and a J tube was replaced at the same time in January 2014. So we gave this ample time, but the little surplus I'd saved in terms of muscle mass and health vanished in those short months. All had been cashed in, and the surgery took very much out of me.

For my January stay (you can see at "Welcome to St. Mary's...Again"), I was on TPN via TVC for much of it...really, all of it minus two days. And it seemed that I was tolerating J tube feedings better than I ever had before. We were all very, very excited, perhaps a bit nervous but we felt we could finally put to rest the worry that things would continue to worsen.

Boy, were we all wrong!

It felt like the Fates were toying with me. As my tolerance for my feedings grew worse (the most significant symptom was that my bowels had stopped moving, and X ray showed air-fluid levels that filled my whole system, in effect, closing the shop. None shall pass.

I pleaded with those Fates, begging what they wanted of me. Had I still something to learn? Had I taught a lesson incorrectly?

Or was this just the way is was going to be?

Soon it wasn't just electrolytes being thrown off. Other labs started coming back with concerning results, and that was this month of February's message now in 2014. I was in the hospital from the end of January and in that time we started TPN, which is the norm for me in starting to trying to fix things.

But in the event of chronic intestinal pseudo obstruction, severe abdominal pain, nausea and vomiting, the interruptions of my life's song, the incompleteness of all of my projects from the constant interruptions, the very essence of who I am were all in danger now.

We stuck it out for as long and I could fight...and in the end, though I think one of my doctors feels defeated because I did go septic again, developed multi-focal pneumonia, and a few other busy things.

But I still feel like we are getting closer to what could be called stability. At this point, I do not CARE if it means my nutrients come from a central catheter into my bloodstream or if I am allowed again to cook my own food and partake and share.

Thriving takes on many forms

Take a look at this. Remember, in November bedbugs infiltrated my home from a nasty neighbor that brought them home three times. In order for them to be eradicated, my apartment was heated to 150*F for three or four days. I was put in a hotel by my mom due to my medical needs, and the specific directions were to take my house plants out of my home, as well as certain medical supplies before my apartment was heated. We even hired a person to makes sure this was done while I was away and I was to agree to pay $300 after she was done.

I came home to a total of eight house plants dead, my favorite being my diffenbachia. These plants also appeared dead...but these are philodendrens. You almost cannot kill them, and sure enough, there was still some green deep in the soil. I trimmed the plants down and it appeared that I was keeping two pots of soil for no good reason.

Then one day a tiny shoot in the pink pot appeared.

And now? Well, I think the picture speaks its thousand words and maybe even more. Because it just proves that even in the face of something that could destroy us in body or -- worse -- spirit, we can still get up again.

We can still grow.

So yes. This looks really, really bad. TPN is potentially dangerous, central lines are potentially dangerous, but so is riding in a car or even coasting on a bicycle downhill (and if you've never done that then you really have  not lived...except now I coast down smaller hills in my chair. Still the same thrill, and takes even more skill).

Yet I thrive still in the face of it. That's what I am dedicated to, that is my choice.

I love this life, even when it doesn't go the way I had planned.

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