My head is reeling. After months of delays and insurance battles, I went into the hospital on Friday and came out not only with a new PICC line, but a (mostly)functioning brand new tube. Etisarap has been reborn. And more than a week before my scheduled endoscopy on December 19th.
We had previously discussed having my tube swapped somewhere other than Stanford, but there were some concerns that we might possibly alienate the one doctor who can manage my care in the Bay Area. But when I was going in for a new PICC line, it seemed foolish not to even try to see if they could do it through interventional radiology. And not one peep out of my insurance company.
Because nothing can go smoothly, there was one hiccup. When we got home and I opened my J tube to start a flush, and a bunch of water came out. And then I started a flush and the water came back out. I called the IR department and a nurse called me back in short order. I explained the situation to her, she said she would relay it to the doctor and call me back.
She called me back and reported that the doctor had responded that the problem was not with the tube, but with my intestines. This was consistent with what he has when he was flushing the new tube with contrast after he first replaced it. My intestines were moving slower than my stomach.
I slowed down the rate of flushing and lo and behold, the water was staying down. The theory is that my small intestines hasn’t had much of anything to do for the past for months when I wasn’t able to feed enterally. So it just kinda went to sleep. Getting formula in isn’t a problem because that is done with a pump. Hopefully, my intestines will wake up soon and remember how they are supposed to work.
Meanwhile, I am still on TPN and will continue to be for a while as I ramp up my formula intake. I started at 10ml per hour and bumped it up yesterday to 15ml per hour. I will continue to increase by 5 ml per hour ever day until it becomes too painful and I have to slow the rate of increase to what my body can tolerate.
Based on past history, I will hit the pain wall at 25ml per hour. And then the rate of increase will slow significantly to an increase of 1ml per hour every two to three days. But truly, we will not know until we know.
Right now I am just kind of reveling in how little pain I am in after a really intense 4 months. Unfortunately, nausea continues to be a significant problem.
I recognize that there will be significant pain and nausea again in my future. That is the nature of gastroparesis. First it was SIBO and this time it was C.diff. I don’t know what it will be next time, only that there will be a next time. And in-between, I will have good days and bad days. Therefore, I am coming to understand that I really need to participate in life as my health allows me. I never know when a bad day, week, month will hit me again.
In that spirit, yesterday, David and I went to the holiday arts fair at the local community center. We met up with David’s cousin Mara, and her children. David made a wreath with her 5 year old daughter. We came home with a new painting. It was a fun experience and one I appreciated the opportunity to have.
Reeling
