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12:09am May 31, 2013

I got my feeding tube put back in today.

It went smoothly using propofol but I felt lousy the rest of the day. I became unable to type and I had to use the Proloquo2go advanced symbol set in order to communicate. Which was a huge relief. Some people act like it you can type you won’t ever need picture symbols, and that’s very much not true

Right now I’m starting on my first tube feed. My normal speed is 45 but I’m starting back at 10. And my stomach has felt so awful I’ve needed all of my nausea meds. They say I might get home tomorrow, but if this nausea doesn’t get a lot better I will ask to stay an extra day or two to settle in.

I just took Phenergan, Ativan, and Benadryl all together and it seems to have taken off the edge of some of this nausea. Lets see how long that will last. And how long my IV will last. I could feel the Benadryl going all the way up my arm.

It still amazes me that three sedating meds, including a neuroleptic, are mostly making my head clear. Maybe nausea is a big part of my fuzzy headedness, plus the anti seizure properties of Ativan. With Ativan plus Keppra my head feels especially clear right now.

My roommate has some kind of chronic pain condition that’s completely uncontrolled, and they seem to be trying to keep her away from opiates for less than great reasons. I mean yes some pain does response to Neurontin, but most doesn’t. And Neurontin is a favorite of doctors who are too scared of opiates to do proper pain management, rather than something to be use only when it’s warranted, like for neuropathic pain. She’s in so much pain she’s having thoughts of suicide and they want to take away pain meds. Like that’s pretty much ever a good idea, when she’s consistently giving pain scores of eight to ten and can barely walk?

Meanwhile I’m trying to persuade my doctor to refer me to the Dartmouth Hitchcock motility clinic, to see what can be done to help my continuing gastroparesis symptoms. They have one of the best gastroparesis docs in the country. I’m going to see Dartmouth anyway soon, because they’re going to be replacing my butt battery in the coming months.

My doctor says we are definitely at the stage with the gastroparesis where you start to think surgical options. Which I knew, but I’m glad he agrees.