Today, I will absolutely start with the good news. I just woke up from a nap, am mid-feed and feeling so much more human again. My pain and nausea are back to a 3 and I am surrounded by cats. Even Xena Malka’s eye is looking marginally better.
But you knew that a longer story was coming, right? And it is not a happy tale. Yesterday was truly horrible. I could not get comfortable as the pressure built in my jejunum and I tried my best to sustain myself on a clear liquid diet in preparation for today’s procedure. But my system was such a mess, that every sip just made me want to vent my G tube.
For the first time I wandered into 4 territory, unable to get comfortable sitting or laying down. I barely slept, spending much of the night just watching the clock until the torture could end. By the time it was time to get up and dressed, I could barely move.
The now familiar trip to the hospital was uneventful. Check in was easy because the woman at the front desk remembered me. This was a Good Thing because I was feeling barely coherent. By the time the doctor came by for his pre-procedure chat, he started asking me about my stoma and I just blurted out “Get this thing out of me!”
When I woke up in recovery, the first thing I did was look at which tube I had in me. It was my old, familiar, albeit leaky style and I was thrilled. As soon as David arrived, he got me some water so I could flush the tubes and everything worked beautifully.
The doctor came by to check on me and he told me that he had flushed the tubes during the procedure and it worked fine. He asked if I had flushed and I told him that I had and everything was working well. He had checked the evil tube before swapping them out and said that he didn’t find a kink, so he was still unsure why it wouldn’t flush properly. But he intended to contact the manufacturer to let them know.
I remain sore and a bit dehydrated, but so much better than I have in days. I am back in familiar territory and any residual soreness should abate in a day or two.
I would like to thank everyone who sent their good wishes. I wasn’t really up to responding, but I did read them all and very much appreciated them. It is amazing how every little bit of love helps, even at the worst of times.
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Hi Eva, I know we have never met but I am so touched (and so deeply sorry) all of this is happening. Thank you for sharing your story, I know others with this diagnosis and I pass along your blog so they know they are not aline. I hope this is a turn around and you enjoy smoother sailing now!