UPDATE WEDNESDAY AFTERNOON
Aparently Kaye got very upset at dialysis and then very sick, so Pete took her on to the hospital. No news as yet.
e·nig·ma (-n g m) n. 1. One that is puzzling, ambiguous, or inexplicable. 2. A perplexing speech or text; a riddle.
Kaye is an enigma. Most people who only see her once a week or less say that she is really making progress. There are moments that appears to be so, but then you go two steps forward and three steps back, all the time, all the time.
They stopped the continuous feeds, as she can now swallow soft foods, so she gets bolus feeds three to four times a day. That should be great news. We'd love to have her off the stomach tube altogether. The problem, she is constantly nauseous to the point of vomiting, or dry heaves. Yesterday, the nurse begged, pleaded and coerced her into going to physical therapy. Once there, she actually followed through for almost an hour. Simple stuff, but still, building strength. Then, when I got there last night, she had already had three doses of phenergan yesterday. So it's the lay down, sleep 8 minutes, sit up. Now that she talks more she is ever asking you to call someone to get her the medicine she needs. Maybe a third of the time, I get some of what she is trying to tell me, enough to give her an answer that is satisfactory. We are ever asking her to eat, because if she would eat, she wouldn't have to have the bolus feedings, but she won't eat. Between my visits Friday, Sunday and Tuesday, I managed to get three sips of tea in her. We are all so frustrated, we're about beside ourselves. Anyway, she will have an ultrasound this week and rule out gallbladder. They keep changing meds and feeding, so we'll try to get to the bottom of it.
I'm afraid the healthcare system is absolutely going to drive Pete mad. I feel so awful for him.
It looks like for him to get the physical therapy and mental therapy she needs, he's going to have to take her home and then take her to the best places himself. This is the current advice he has been given. How he is going to do all that with dialysis, is beyond me. Lord help him, and all of us too, mostly my poor sister.