David is still working on the story of my adventures as an inpatient, but I keep distracting him with needing someone compos mentis to track my meds, bring me things (and not just because I am under a cat, but because as you will soon read, malnutrition has left me a bit wobbly) and the like. Instead I am going with a non-linear approach and sharing today’s update now.
I am home and the pain is mostly being managed, by which I mean that I can tune it out if I am adequately distracted. I am still only able to feed at half my normal rate in a drugged sleep (benadryl being the drug of choice), which we have dubbed “benadryl naps.” That gives me a grand total of 470 calories a day and a bit less than 8oz of “free water” towards my hydration.
I am doing my best to hydrate orally with baby popsicles (2oz) of either juice or Gatorade and the occasional 1oz of juice with my meds. So maybe a generous 6oz/day. But David got me delicious papaya and passion fruit juices from the local market, which is a serious bonus for my tastebuds, who are feeling kinda neglected. I am not so much craving food as I am flavors.
We have gotten my nausea back under enough control with access to my primary motility drug and medical marijuana that I am no longer venting more fluid than I am taking in. And I have gone back to eating in 3 bite increments every few hours.
My doctor is “unconcerned” about my nutrition or hydration. My first appointment with a new GI is July 17th. Although, my complex care coordinator has set up a total of 4 appointments with motility specialists in 3 states and I am on all of their cancellation lists, so there is some hope for something sooner.
“Unconcerned”!!
I am stunned. I realize that you and David deal with this all of the time, and yet this level of negligence surely must be a new low.
For what little it is worth, I am holding you in my heart and thoughts.
Unconcerned. I hate that person. Inexcusable. You must be getting used to it by now. There must be someone decent out there. I am holding out hope and sending cyber hugs.
One of my friends went through similar issues (not entirely solved, but improved) and got the same lack of concern over malnutrition from his doctors. It took the dietitian pushing to get further help. But I’ve seen how miserable people are when malnourished.