Bunn’s Prairie

I am not sure what exactly happened this weekend, but something has changed with Kaley.  There is no doubt in my mind that she has entered the next phase of recovery.   According to the Rancho Los Amigos Cognitive Scale Revised it appears Kaley has broken through into level IV range.  Kaley is now very alert and responds to pretty much everyone with her bubbly attitude.   Her short term memory is very limited or even absent.   She claims to remember things, when she does not when pressed for details.  I suspect this is human nature of wanting to please the person and not wanting to appear forgetful or ignorant.   Heck, I do that sometimes!   She has been confused and a bit ‘agitated’ from time to time the last few days.  By agitated, I mean very determined.  Some things she has been confused about are things like: Tuesday spent most of the day saying she said she needed to catch a bus to get to school in Osseo (where she went to High School).  She said she was an eleventh grader.  Then yesterday she was convinced that her father was coming to take her to a doctor’s appointment.  About halfway through the day she abandoned the doctor’s appointment part, and she was simply going to her parent’s home.   While this is encouraging for all of us, this is also a bit scary for all of us as well despite our understanding that this is a normal part of the process.  She has said that she has had some trouble seeing.  She said everything looked garbled up (even after I tried to get her to look out of just her good eye).

Other improvements are her coordination.  When she is not tired, the tone in her arms seems to have reduced and she has shown more mobility.  Her shoulders are still pretty locked up, but we’re going to try a botox shot once insurance gives us the green light.  In PT on Tuesday she had her best day yet, where she walked the length of the parallel bars turned around and sat in her chair with minimal assist (she used the parallel bars to support herself).  Then yesterday, she walked around the new PT room twice with me on one side for support and the therapist on the other side (he was also supporting her from front to back via the transfer belt).  When we walked twice as fast during the second lap she kept up fine. While she had a lot of assistance yesterday for moving, the fact that she was moving her feet without cues was wonderful.  The only cues she got were to walk with a wider stance for stability (which she followed right away).  During one of our rests, she sat at the edge of the bed and was able to balance and support her torso without any assistance.

In speech she also is having minimal trouble managing her saliva at this point. She did very well with swallowing water yesterday morning.  Then for lunch I brought in some Kraft mac & cheese and Kaley did very well eating a couple of bits of that before she said she was done.  Then to wash that down she had another sip of water which she immediately swallowed down.  Yesterday was a very good day, as far as speech was concerned.

Sufficed to say the whole facility has been abuzz with Kaley’s recent improvements.

Kaley had an amazing 48 hours. When I saw her yesterday morning, she was awake and responding well. I thought, good she’s going to have a good day today. Unfortunately I couldn’t spend the whole day with her, for family reasons. However, when I returned to see her in the evening, she was participating in a hoedown of sorts and was singing along! Madelin Paul described yesterday as “the best I’ve ever seen her.” That was great. I stayed until about 10pm with Kaley and watched a movie. It was mostly me watching the movie, but Kaley said she liked having the company as she, as she would say, was being restful.

Today, I brought a good friend of ours, Earthabunny, to see Kaley. When we got there she was watching TV in the lounge and she immediately started talking to us. I needed to replace her wireless oximeter and she stopped me from removing it, telling me that “she was supposed to keep it on.” I assured her that I could veto any instructions that the nurse gave. I went off to run some errands while Earthabunny stayed to visit with Kaley. While I was gone, I discovered that Kaley had been awake since 4 am. The nurse went in to silence her oximeter alarm (presumably because Kaley was trying to remove it (thus the comment to us later in the day)). At 4 am Kaley told the nurse audibly, “I’m ready to get up.” When we got there it was about noon and she was still going strong and talking a lot. Earthabunny said she wore Kaley out pretty well, talking about girl-ly tings (like what colors does she like to see Andy wear, as Earthabunny was about to go clothes shopping with me for my new job). Anyhow, Earthabunny hadn’t seen Kaley in a month or so, and was amazed at what she saw. To be fair, this was Kaley’s best day by far that I’ve seen or heard about.

Earthabunny and I went shopping, and I later called back to the home to have someone put the Twins-Yankees game on for Kaley, and her nurse told me that since we left, Kaley had declared that she was “going home” and she was “going to take a bus home.” Besides what my friend Mike told me when he heard the story (”It’s always a good day when someone decides to use mass-transit”) we all got a good laugh and cheer out of Kaley’s decision. Hopefully, this will mark a turning point in her recovery. The awareness and ability and desire to communicate verbally has been wonderful and heartening for us all.

Look forward to a guest post from Earthabunny later this week, as she describes her visit(s) this week. She will be visiting Kaley again on Friday while I am off helping family recover from the floods in Cedar Rapids, Iowa.

Kaley continues her improvement, although not fast enough for any of us (even Kaley!). She visited her neurologist for the first time in 3 months, and he was pleased with her progress. We decided about a month ago to change the scheduling of the ambien. Instead of getting it twice a day plus as requested, we changed the dosing to only as requested. I had noticed that, despite giving Kaley a bump in awareness and speaking ability, after the initial effects wore off, it often left her more lethargic and tired. After the a 1 month trial of life with reduced ambient, the report from pretty much everyone in Kaley’s care, from me, the nurses, and the therapists all came to the same conclusion. Despite missing out on the initial improvement, Kaley’s quality of life and abilities have improved in that time. Her abilities are more consistently present and she is awake and able more often then not. Were as before her good days were very much intermixed with sleepy or bad days. I like to explain this change as saying that her brain is starting to react more like a healthy brain.

Kaley’s communication skills continue to improve. She still is fairly quite, as speaking still takes a lot of energy and work. She mouths and whispers words at this point. Speech therapy has done a good job of helping Kaley relearn how to swallow. She can manage her own saliva fairly well now. She is even starting Kaley in on some soft foods. Suggestions and ideas are welcome.

Kaley will most likely (not confirmed yet) receive a botox injection in each of her shoulders in an attempt to increase their mobility and range of motion. Kaley has some funny boots she wears at night to help prevent “foot drop” due to lack of use and movement. No such product exists for shoulders. The botox shots with follow on therapies should help with this.