We spent an hour with the Infectious Disease specialist yesterday - after another 5 days on the Vancomycin, Addison's diarrhea is not improving and she's still symptomatic. Every other time, even though the infection has always come back, she still always starts to feel better for a few days and the diarrhea quits. Now she's showing signs of dehydration and I am just hoping to avoid another hospital stay. I don't understand why she's not reacting to the medication anymore. There's nothing else left to try but a 6 week trial of 'pulsing' the Vancomycin and the next step will be a stool transplant. I'm just frustrated that she's not able to fight off these 'normal' things like the rest of us, and we have no idea why her body doesn't respond to treatment.
She's had diarrhea form the C-Diff since October. I'm tired of bleaching things, of washing sheets, of throwing away infected clothing and pajamas. but mostly I am tired for her because it's so damn sad that she doesn't know anything else anymore besides feeling like crap all the time. Can you imagine having diarrhea for 4 months straight, many times a day? And not being able to ask for help or tell anyone how you are feeling.
I'm usually not so negative, but I feel like beating my head against the wall. We've reached a pinnacle once again where we can't help her, there's no more testing to be done, and we are just stuck living out this shitty groundhog day over and over and over. I don't even remember what 'normal' life was like anymore....its such a distant memory to remember when my days weren't consumed by therapy, pooping, feeding, neurological regression, drs appts and all the other things that we have to worry about now.
Okay - time to go get it together and stop feeling sorry for myself! Thanks for listening.