Regression

Tuesday, December 30
I had to work late this night (wound up being until 4 am, argh!), so I was not able to visit Mom. I started calling the hospital at about 8:30 pm trying to get an update on how she was doing and to ask the nurse to let Mom know that I couldn't make it but that I was thinking about her. Each time I called, I was told the nurse was in another room and could I call back in 20-30 minutes. By 11:30 pm, I was on my 5th call and was told the nurse was at lunch. In my oh so pleasant way, I got the nurse on the phone. Veronica had been Mom's nurse the last night or two. She is very nice, but English is not her 1st language (Spanish is). When she got on the phone she said, "Your mom is resting well now, she is calm, she has a seizure earlier, but she is ok now." A WHAT? I flew off the handle... 'Why wasn't I called? When did this happen? What is the treatment?' I think I scared her a little, because she then immediately said, "Let me get the charge nurse." The charge nurse then told me it was not a seizure, but it was "(insert medical words here) dyskinesia". They love to tell me that Mom has Parkinson's lately (ever since she told a nurse one day that she remembered the day the doctor told her she had Parkinson's... as far as I know that never happened). The charge nurse said she was in the room with the doctor when this was happening and that he did not believe it was a seizure. His plan was to watch her overnight and then do a CAT scan in the morning. I told the nurse I wanted to be called if they did a cat scan... my phone never rang, but one was done.

Wednesday, December 31, New Year's Eve
I had been planning on going out of town for the weekend and I did not know what to do. I called for an update at about noon. Mom was unresponsive. The cat scan was done but the results were not in yet.

I was so mad that I knew if I went over right away I would create a scene. If there is one thing I HATE about this hospital is their consistent lack of communication and their attitude when you try to call to get any information on the phone. If they had their way, I would be camped out in Mom's room 24/7 so that they didn't have to take time to tell me what was going on.

So I continued my prep to leave town, still unsure if I was going. I talked to Dianne, and she called the hospital, too. She was also told how they are too busy for phone calls, that the cat scan results were not in, and that we would have to be there when the doctor rounded (and who knew when that would be) in order to get the results since they don't give that information out over the phone. Dianne helped convince me that I should go as planned and that she could look out for Mom while I was gone, starting after dinner that night. So I went to Tampa, and Dianne and Larry went to visit Mom. While they were there, they ran into the doctor. He was very nice and told them that there were still no results, which he said was a good thing since it is the bad news that seems to travel fastest. He also said he was discontinuing all meds (ativan, valium, oxycodone, morphine, lexapro and protonix) that might be mind altering to see if they are causing the confusion and the dyskinesia. He then was adding a anti-psychotic (can't recall the name) to see if it continued or not.

The doctor also reminded us that Mom is still not well. If we compare her this week to last week, it can be disappointing. But if we compare her to 2 or 3 weeks ago, she has improved. I was reminded that we might take 2 steps forward and 1 step back, and that was not unexpected.

Thursday, January 1, New Year's Day
Dianne and Larry went to visit Mom again. She looked a little better, but was still unresponsive. The cat scan results were in, and they were negative. So we started the new year off with some good news.

Friday, January 2
While Dianne and Larry were with Mom, they called me. She was more responsive, if not more alert. She was squeezing Dianne's hand in answer to questions but would not talk to her or open her eyes. When they put the phone up to Mom's ear for me to talk to her though, she actually spoke! I told her to keep focusing on getting better and she said "OK". I told her that I would be there in a few days and she said "All right." This made me happy.

Saturday was more of the same, however they did have Mom up in a chair for about 4 hours! When Dianne and Larry were there, they tried to get her to talk, but she said she was afraid to. Even though the respiratory tech told her there was nothing to worry about, she was still untalkative.

Sunday, January 4
At 8:00 that morning, I got a call from the hospital. The nurse for the past 4 days or so was Malisa, and Dianne had been raving about how nice she was. She was calling to tell me how talkative and alert Mom was that morning, and how happy she was to see that! Finally I get a call to tell me news, and good news at that!, but so early on a Sunday morning. Beggars can't be choosers I guess.

I picked up Dianne as I came back into town, and we went to visit Mom together. She was more responsive. She had her eyes open a lot, but she was also very sleepy. She was still resistent to talking.

I had brought detangler with me to try to work on Mom's hair. Malisa mentioned having promised to wash Mom's hair, so we agreed to do it together. Have you seen those State Farm commercials... (picture me in the middle of a red dot standing at the head of mom's bed) I reached the point where the irresistible force met the immovable object. Malisa and I had the best of intentions of taking care of Mom's hair without cutting it... but Mom's hair would not budge. It is a giant dreadlock of chaos. Malisa and I tried for about 45 minutes, but Suave kids detangling spray was not going to cut it. Malisa called a Sally's Beauty Supply store and I will need to pick up a special product on Tuesday.

But again, I am pissed since for over a week now I have been trying to get someone there to help with this since IT IS ALL THEIR FAULT, and I get nothing! When Malisa actually saw what we were dealing with, she got mad, too. There is no excuse for letting it get like this. All I can think, is they would wash it, but not brush it. Enter over a month of sleeping on it like this, and viola, you get a mess!

So, when it is time for Mom to read this, and if I have had to cut your hair, please please please don't kill me! I really am trying!

Looking forward
Her breathing has remained fine through all of this past week. Her creatinin is still working it's way down (was 2.0 last weekend). And physical therapy will continue to work with her. She is (understandably) depressed. If you get a chance, please send a card or an email, and I will post them in her room.

Postnote - This picture is from our whale watching excursion in Juneau, Alaska.