This is Eva Actual.
I have a daily assignment from my pain CBT class to write for 10 minutes every day. That kind of concentrated effort does cause me a little pain, but nothing the associated binaural relaxation technique (think EMDR) doesn’t offset. And given that I had already worked out a system to get a little writing done, I figured why not write a blog post, for a change.
My status is very much improved. We now think that I picked up the C.diff at the hospital in Springfield, MA, back in July when my tube kept flipping and I got to know their ER really well. The timing lines up with the onset of the pain. Despite being hospitalized twice after that, it didn’t occur to anyone to check for C.diff. Not even when I had a consistently high white blood cell count for months. The doctor at the hospital attributed it to the TPN and my PCP just followed his lead. To be fair, she knew nothing about TPN until it was foisted on her by my GI.
I am now on my second round of antibiotics, and finally on the one that is the preferred treatment for C.diff. Apparently it is designed to stay in my gut even after I finish my course, so my symptoms should continue to improve as they did after I completed my first round of antibiotics. During the 10 days it took for me to get the prior authorization approved by my insurance company, I spent 7 of those days unmedicated, which was incredibly frustrating. Fortunately, it all seems to be working out in the end.
The TPN is down to 12 hours a day. David hooks me up before we go to bed and then disconnects me in the morning. On days when I have no need or interest in getting up that early, David disconnects me from bed. Which is the normal person equivalent of having your partner bring you breakfast in bed. I have a pretty sweet deal.
My PICC line (through which I get my IV nutrition) is also designed to be used for blood draws for my weekly labs. However, it has never been particularly great on this front. Even when the nurse did get blood return, it tended to be sluggish and barely fill the tubes enough for my labs. David and I have learned a lot about the minimum fill requirements of the golden and lavender topped tubes used in blood draws.
Right now I am on day 2 of leaving in CathFlo* overnight to clear out whatever is hindering the blood return. CathFlow is the roto-rooter of catheter occlusions. See all the fun things one can learn from being a tubie?
After months of neglect, I have started flushing my J tube again. It too, is somewhat occluded. I can get in 25ml twice a day with some discomfort, but no pain. Any more than 25ml at a time just bounces back out. I am not going to invest the time and energy (and possibly pain) to clear out the tube. Instead, I am to increase my flushes to 3 times a day and continue that until my tube swap on December 19th. This should be enough to get my intestines warmed up to resume enteral feeding again.
The plan is for me to go back to 18 hour feeds (I had been at 20 hours in July, but that was to maximize caloric intake). Since we will be titrating the TPN down as we increase the enteral feeding, I can take the extra two hours off without losing any nutrition.
*David and I both call it Caff-Pow to each other.