Update of 2/20/15


Update of 2/20/15

pulling-hair-outOn Thursday, I had regular cares today with my clients. I did talk to Mom today and she has several things she wants me to bring up to dialysis tomorrow. Most of it is things that were already planned and the rest of the stuff I will take up Sunday when I go for my weekly visit.

On Friday, we had dialysis. I have brought the items mom wants. I received call from social worker at rehab center. We will have to do some rescheduling for Tuesday for Mom’s care conference. Th new schedule is as follows:

10:00 a.m.--meet with PT to set goals,
11:00 a.m.--meet with OT to set goals,
Noon--lunch, 1:00 p.m.--leave for town for follow-up with vascular surgeon (I get to ride the transport bus with mom),
3:00 p.m.--get back on transport bus to head back to rehab center,
4:00 p.m.--care conference with all parties involved. At this point I am told it will be PT, OT, Mom’s MCO care team, the rehab center social worker, the charge nurse for Mom’s wing, Mom, and myself with written reports from the doctor who follows her at the rehab center and the surgeon and a conference call to her dialysis case manager. 5:00 p.m.--supper,
6:00 p.m.-- I am free to visit with Mom and head home at my leisure.

I also have to vote on Tuesday before I leave to go o the rehab center. Mom has already voted by permanent absentee ballet (disabled can get a permanent absentee ballet mailed to them for every election). Polling place opens at 8:00 a.m. so I plan on being there then and will get breakfast for the road if needed to be on the road by 9:00 a.m. I have made arrangements to have both clients that I was scheduled for the day to be covered by a back up.

On Saturday I had my amateur radio class and just as I am getting out of class I receive a call from the rehab center that they are taking Mom to the hospital as her incision is red, puffy, warm, and has a yellowish discharge. I was told by the rehab center that they would have a CAN with her and that I would not be allowed to see her at the hospital. They also told me that they would call me when she gets back to the rehab center. I did not receive a call by late evening and was told she just got back and that they still had to review the paperwork and get back to me. About an hour later they called back that she had a very mild case of cellulitis. They put her on an antibiotic. I asked if the antibiotic was coordinated with nephrology as we have had antibiotic dosing problems before and was told that they did not know and I asked them to check it before she gets any more as to avoid a toxic build up in her system.

On Sunday, I made weekly trip to see Mom. I was told by nurse on duty when they came in with Mom’s antibiotic that it did not matter if nephrology reviewed or not as they had a doctor’s order for it. I also found out that they took her to a hospital that is not affiliated with her normal hospital and the dialysis center. I told them that they would then need a full written report at dialysis the next morning. I was told that they had already sent a copy to the dialysis center.

On Monday, we had dialysis. Get to dialysis and inform Mom’s dialysis nurse case manager. They did not have a copy of the report or even a report of the medication change. They called the social worker at 8:00 a.m. when she first came In from the weekend. She went and dug up the paperwork and faxed it. No where do they show a nephrology consult on the med change but they are correct from what I am being told.

On Tuesday I get there for her care conference and find that she is very groggy, weak, and not eating! We have the care meeting and I find out that much of her meds have been changed when she was in the ER at the other hospital. When we get to the follow-up with her surgeon I also found out that they have not updated her record with her primary hospital and the dialysis center on all the med changes! When we get back from the surgeon appointment for supper they bring her a clear liquids tray and she does not eat much but starts to hallucinate and her 02 sat is falling (72%). They immediately started O2 on her and call the doctor who follows her at the home. (He is a doctor at the clinic for her primary hospital in the town of the rehab center). I decided I was not leaving until I had some answers! They took her off her narcotic pain medication and put her to acetaminophen. They also cut her antibiotic after contact with the nephrologists.

The following attended Mom’s care meeting: Mom, myself, the rehab center social worker, activities director, rehab center dietitian, her charge nurse, OT, PT, her MCO social worker. The MCO Nurse participated on the phone. The doctor who is following her sent a very short report of no substance and canceled the call to her dialysis case manager as he supposedly talked to her and included her information in his report but I did not hear anything on dialysis! I will follow up on that on Wednesday at dialysis.

On Wednesday, I got to dialysis and found out that she had excessive weight gain. The normal two-day weight gain should be no more than 2.4 Kg. she had a weight gain of 7 Kg. They are doing diafiltration today and she will have to come back tomorrow for dialysis. If she does not improve today at dialysis she will be going to the hospital. She did improve but still is not back to herself.

On Thursday, we had extra dialysis today. Between yesterday and today they have taken off 9 Kg and she is still about 1 Kg over her dry weight. Doctor who is following her at the rehab center is to be rounding this afternoon. Due to a paid client and lack of notice for this visit I was unable to be at the rehab center for the appointment but asked that the doctor call me and he did not!

On Friday, regular dialysis today. Mom gained 1.1 Kg since yesterday and that is within range. They should be able to get her to her dry weight today. The dialysis center does not even have a report on the doctor visit and he is part of the same health system!

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This is a rural hospital with very small rooms and they only allow 1 person back with her and the CNA from the home must stay with her so no one else is allowed with her.


Why oh why is this so typical of hospitals/rehab centers? This brings all the nightmare hospital visits back to me. I could write a book on the poor judgments, overdoses, and just plain craziness my Mother endured on each hospital visit. Last visit they sent me a paper to grade them. I went wild on that form. You sure keep a cool head, Larry!


Oh, Larry! Your photo for your post says it all. What a nightmare! \r\n\r\nYou really are amazing. I so hope you get your answers and peace of mind this weekend.


I have SO been there, it sometimes feels as if the caregiver is the one juggling everything and if WE drop the ball, everything will fall apart. It's so upsetting when the professionals do not do their jobs, that we fear without our watching so much will fall through the cracks! Hang in there, you are doing great!


You are juggling SO many different schedules and specialists. Doesn't it make you angry when they're not on their game, and they throw a wrench in the process, like not updating their prescription records? Arggghhhh! \r\n\r\n(You could run a major hospital, with the organizational and communication skills you have!)