Here’s a neat picture of Jacob wearing a "hat" on his head. It didn't take long for him to find it, snatch it, run away, and try it on. Many thanks to a parent from my school for loaning this to us… though I’m not sure if it’s the type of thing that you give back once it’s been used… sort of like a Kleenex.
Not much different medically today. Denise’s bed sore has improved quite a lot over the last week. It’s getting small enough that improvements are more noticeable. Today her pulse was 86 in the morning (laying in bed, comfy). At an appointment today she was at 109. Not bad considering how uncomfy she was and how that would make her heart rate go up. Potassium’s down from 3.9 to 3.2 since Saturday. Sodium after a couple sodium IVs was 134. She’s feeling tired & weak, didn’t eat much except at lunch, and threw up both during the morning and evening.
There was a cardiology appointment today. Interestingly, he wasn’t too concerned about the heart status. Apparently the EKG was OK. He was more concerned with pulling for us to get Denise’s J-tube inserted sooner rather than later. He’s a real nice guy and has been on Denise’s case (in a good way) since she arrived at Huntington’s rehab.
A caregiver (this is different from the home care nurse that's been visiting to change the bed sore dressing & check heart status) was scheduled to come in yesterday but that didn't happen. We got a call yesterday morning saying that the weekend person that was doing the scheduling pulled our person and put them with someone else. Sorry. Good thing my aunt's in town or we'd have been left high & dry. We're getting a free day out of it, though. And I'm left wondering about the terms "caregiver" and "caretaker." I've heard of ill people having caregivers and inns having caretakers. Are they about the same? And shouldn't the person receiving the care be referred to as the caretaker, since they're getting care from the caregiver? A new caregiver showed up today. She was very nice but isn’t able to work the hours that we’ll need. One thing after another, right?
A new home care nurse came today also. I guess that either they rotate around, or perhaps the previous home care nurse didn’t have the right license to deal with IV equipment and blood draws. She was also very nice and Jacob took to both her and the caregiver. Always a good sign when a kid likes you. My aunt had to drew 8 or 9 tubes of blood from Denise for tests to see about the increase in calcium and the electrolyte status. I don’t know what a Vacu-tainer holder is, but my aunt needs one but the lab wouldn’t provide one to the home health care nurse. The new home care nurse that rotated in today thought it was crazy that the lab wouldn’t provide one (and upon hearing Denise’s history also thought Denise might have been sent home early).
My aunt was on the phone with the case manager yesterday. At one point, said that we have the option to take Denise back to emergency and get her admitted to the hospital again. Denise already has a hard time commuting in the car and waiting for appointments, so we don’t want to put her through another waiting room experience in the emergency room. Hopefully the J-tube will prove to be even better than the IV and everything will be manageable at home. I guess that at one point the case manager stated that I didn't really have to take Denise home from the hospital. I think I've got it pretty well-documented on this blog that I hoped that she could stay through the New Year weekend. I was told by a rep from PacifiCare and a friend-of-a-friend that works in medical insurance billing that if a doctor says there's no medical necessity, she could stay but we'd have to pay for it all out of pocket. Anyway, I'm thinking of all the pleading I did with the doctors, nurses, insurance, and case manager, clearly asking to keep Denise in the hospital until after the New Year weekend, *especially* in light of all the problems we had with the previous weekend's discharge, and nobody told me I had the option to not take her home? That gets me pretty cheesed off (grumble, frown). I've had people tell me to speak to the hospital's PR department, the hospital's patient rights ombudsman (I tried that Friday before I had to pick her up, but their office closed a few minutes earlier), and lodge a complaint with the insurance commission over how these two discharges have gone. All in good time, and we are definitely getting our paperwork & thoughts organized to do those things. But first, we're spending our time & energy on what will help Denise.
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