Arlene here - I arrived to see the cheerful physical therapist and her assistant lifting Bill so he could sit on the edge of the bed for a few minutes. It was obviously painful; Sonny was there and we applauded when he got to an upright position and Bill smiled. The PT said this time was better than last time. Meanwhile, the Physician's Assistant was waiting to explain to Bill the need to do two "procedures": move the location of the dialysis connection, "tunneling" it, and replacing the plugged feeding tube with a larger one. Risks were explained. Bill understood and was able to sign the consent form. He would be sedated but not put under. He hadn't had nutrition for 24 hours, a terrible thing for someone who's lost 20 pounds and most muscle mass, but it had to be. His stomach was cramping and he was not comfortable.
I asked to speak to the docs about what was happening. Family physicians Miller and McKinney arrived; Dr. Miller explained in Bill's presence that he'd had cardiomyopathy and his heart had recovered, that it was not due to cardiovascular disease (no surprise there), and the congestive heart failure may have been due to a virus or perhaps there was a scleroderma connection. The related problems -- lung and kidney and fingers - were due to insufficient blood circulation. The fibrosis revealed by the kidney biopsy has not been fully analyzed yet but there could be a scleroderma connection; scleroderma stiffens and narrows blood vessels. I asked why has he lost so much weight while getting 2000 calories a day. She said when there is no activity and muscles are wasting the body doesn't absorb much, the body's systems aren't working properly. We'd like to understand this better; I've asked Bill's sister Betsy to help us understand. She is a psychologist who works with people with weight issues and with physicians. She's given us a list of precise questions to ask.
Dr. Miller also said Bill's white blood count is elevated; they are monitoring this closely and will administer antibiotics if needed. Everyone must be careful not to bring germs and viruses to his room! Wash hands compulsively, don't come in if you don't feel well. The kids should probably wear masks and gloves around him.
The speech therapist, helpful and friendly, explained how to help Bill practice swallowing -- raise the bed so he is vertical, give him only a very tiny ice chip - melt if necessary - have him feel his Adam's apple go up and down for a full swallow. I was unable to work on this with him because I had to leave before he was returned from the procedure (I waited 3 hours).
Sonny washed and brought in a pair of warm gloves for Bill to wear and he was wearing them as he was transported out of the room. His hands need to be exercised.
Dr. Miller is rotating out; her replacement's name is Dersarkissian. Dr. McKinney is not rotating out yet.
Bill's nurse on this side of the building is insistent that there be only 1 contact person; until Abigail returns on Thursday, that person is Kris.
Bill is still able to sign his own checks. While taking care of my mother amd being medical power of attorney, it was a huge help that my brother was financial power if attorney. Who does Bill trust with signatures and financial as well as medical back up for when he needs it? This needs to be out into writing or Social Security can be very difficult to deal with. Banks are happier with names being on the checks for his trust and o. Signature cards, too. That will be an adventure for Abby if she can not get him Into a car. A Lawyer can come to the house or hospital , but the bank won't. We just learned while helping John's brother, hat the little grocery store bank can even help with most things, even signature cards.
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