The Sweet Taste of Food

There has been very little change over the last two weeks. Mom is still in the same room with its bare walls, with the same size traych tube, taking antibiotics for her gram D negative rods infection, and with her fist size dreadlock of hair... and she will stay there there until her traych is completely gone.

She is still confused at times. Sometimes she sees things in her room (fish in the lights, sea turtles on the ceiling, dogs under the covers). Sometimes she thinks she is home in her bedroom and she doesn't understand why I wont bring her what she wants (a fan, her purse, Todd). But her personality is there. And she has not tried to get out of bed anymore.

She has not been up to talking on the phone a lot lately. When she spoke last with Eileen, she swore she was having surgery the next day on her arm because there were growths all over it... but her left arm is more mobile now and there is less pain.

She still wants to take a shower more than anything else!!

She is still a bit too congested for them feel comfortable downsizing the traych. However, as of yesterday, she is able to eat! It is mostly pureed (sp) food and juice, but it is a very positive step! Today, Larry helped feed her puree of roast beef.

So, Dianne and I will redecorate her room as we wait for Mom to be traych free. Any suggestions, cards, etc, are welcome!

Postnote - This picture was taking as we were exiting the boat at Icy Strait Point, Alaska.

No More Monkeys Jumping on the Bed

The first half of the week of January 5 was mostly uneventful. Mom became more and more aware. However if there is one constant in the universe, it is that she wants to get herself into the bathroom.

Thursday night, we watched the Gator game together... one day I will tell her we are National Champs again! =)

Thursday night I also talked to her nurse about her hair. She asked another nurse (male, named Kim) who used to be a hairdresser to take a look. He thought it was salvageable, and they said they would start working on it the next night. Yay!

Friday, January 9
Mom's case manager called at about 9 am to actually give me some good news.

The next step in Mom's care is a rehab facility. Way back (mid October) when Mom had her day of clarity, she picked 3 rehab facilities. First - Hunters Creek Nursing and Rehabilitation Center (across the street from Karen's apartment complex and 3 miles from my house); second - Health Center of Windermere (14 miles away); third - Lake Bennett Health and Rehab Center (24 miles away). When the social worker told this to me, she said the top pick was not in mom's insurance network.

So on Friday, the news changed. It appears the second and third choices do not take traych patients, and Hunters Creek will take Mom and accept her insurance!! And then, to return to their normal poor communication... she said Mom could be transferred as early as that afternoon... What! Way to give me a heads up! She said she would call me later in the day to confirm.

At 4:00, she called back to say that it would be a few more days as Mom has developed a UTI and the antibiotics they have her on require some closer monitoring. OK.

Once again, while on the phone with her, I asked about Mom's hair. She was under the impression that it had been corrected. WRONG. But I did tell her that Gigi and Kim were planning on giving it a try, and that I appreciated that.

I was heading out of town again, so Dianne and Karen headed over to visit Mom. Mom had fun with Karen. A little while into their visit, Dianne had a coughing attack and headed out to the car. She figured Karen would be out shortly. After 30 minutes, she tried to call Karen's cell... no answer. Ten minutes more, and Karen answered, "You will never believe what she did!" Mom had Karen lower the rail, help her to a sitting position, and then attempt to stand. I stress the word attempt, because she CAN'T! So Karen was flipping out trying to figure out how to get Mom back on the bed. She couldn't walk away to get help, so she called out and got someone to come in. Poor Karen! The nurses yelled at her for what happened. She had no idea! So Dianne came back in and Mom had the cat that ate the canary grin. She still did not see anything wrong with what happened.

Sunday, January 11
Dianne and I went to visit Mom. Her personality was all there. We were laughing and joking and she was able to remember the cruise and her pneumonia. She got fuzzy around the start of the diverticulitis. Then the nurse came in to tell us how first thing this morning she found mom sitting upright with her legs caught between the rails. She was trying once again to get out of bed. We tried to make her say the words "I cannot walk yet" but she refused. It was a really good visit. We also took down all the cards and stuff in the room in preparation for moving to the new place.

At about 11:30 that night, I got another phone call from the hospital. This time it was the charge nurse. The tech went in to do vitals... and found mom sitting on the floor!! She told the nurse she was 'just getting up to get a glass of water.' Because if there is one thing you should try it is to get out of bed when you can't walk to get a glass of water that you are not allowed to drink!! The staff physician examined her and said that she did no damage and she was not complaining of any pain. I checked in again Monday afternoon and she was still doing ok with no pain.

Looking forward
At this point it will probably be mid week before she moves. The orders are already written to downsize to tube size 4, but they are waiting for her congestion to clear up a little more.

Postnote - This picture is from our Gold Mining excursion in Fairbanks, Alaska.

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.