Bill: Thurs. Jan. 16: leftasaurus stronger; left elbow looser

[post by Julie]

Bill and Ayn affectionately call his left leg "Leftie."  But sometimes, when it seems to be monstrous and not cooperating (as if it were a separate object), it gets called "Leftasaurus." 

I'm here to tell you, Leftie has made great progress this week.  When Bill is getting in my car, I have had to help lift and maneuver Leftie on his last trip from the running board into the car.  Often it has been fighting the tension in the leg, with verbal clues to Bill to "march," or give the knee-lifting motion. Thursday, however, I was happily surprised when he lifted all the weight, and I only had to help finesse the narrow passage between the seat and the door frame! 

Go Leftie Go!

Speaking of left-sided objects: Bill's left arm.  Occupational therapy (Wednesday) worked his left shoulder and hand; she is quite pleased with how much the left elbow has relaxes. His shoulder and shoulder blade are sensing some improvement, although I can't see it yet -- when she instructs him to roll his shoulder back, I can't see it, but she makes comments like "Very good" or "that's better" because she can feel the muscles/tendons engaging. The left hand is better at staying straight and not curling at the wrist, but the fingers still have to be constantly stretched to be available when control returns.

Thursday was the first speech evaluation in the two month's Bill has been home. Bill and Ayn had a couple of prior appointments they had to cancel because of icy mornings.  Just a reminder, speech covers more than talking: cognition, memory, attention. 

Bill sometimes does the funniest thing of adding difficulty to simple instructions. One evaluation was to name as many animals in a timeframe as he could. So he sets off alphabetically, one per letter, and when he gets to "H" I'm expecting 'horse' but he comes out with 'hyena.'  And us mere mortals might give 'mouse' or 'monkey' for "M" but he delivers 'marmot.' Unfortunately he got stuck on "N" and couldn't come up with anything, and couldn't break his own pattern to continue past, so that will be one area to work on.

He will have PT today (Friday) so maybe an opportunity to try again for some video.

Bill: It's not about me [Julie]

[post by Julie]

I've had so many people say, "Julie, you are so strong" or similar comments that I feel the need to set the record straight.

First let me say I really appreciate the encouragement, but Bill is the one who has worked hard to come so far. One of my [many] cousins remarked that we all have our crosses to bear, and man is that true throughout our family. Yes, if I start through the list of my brothers and 16 cousins, each has had their fiery trials. And we all have been a big support group for each other.  It's not just about surviving challenges, as we celebrate life's accomplishments too! Marriages, births/adoptions, house-buying, travels, the whole messy lot called life.

My posts are, obviously, from my point of view, and I suppose that view can naturally carry a martyrdom tone -- not my intention.  I've invited Bill to be an author on this blog; he's a private sort, and might not have much to say about himself.  We will see.

Bill: Thur. Jan. 9: PT stairs

Stairs! Well, one step up on a riser. Yes I have videos, but once again am having problems posting any. I will send it to Bill and have him figure it out.

[post by Julie]

 

Bill: Weds. Jan. 8, Six Months

Six months.

SIX months.

What have I learned? Gosh, where to start.  Although I am not in the medical field, I was lucky to have taken advantage of first aid training in my prior jobs, AND read information in our weekly employee newsletter during "heart month" on recognizing strokes.  Bill delayed Ayn a little bit in calling for help, because he only knew he felt funny. As Ayn saw him deteriorate, she convinced him to let her call me.

Why did I even ask the stroke questions? Was it because I've asked my husband before, and it's my only tool in the toolbox? Regardless of Ayn's answers - Bill's answers - I would have said to call 9-1-1 to have paramedics check him out, and they wouldn't transport him if they didn't think it was necessary.

I have also become very close to my daughter-in-law. She is so dedicated to Bill and his recovery. By staying at his side this ENTIRE time, she has been able to point out issues early on and advocate on his behalf.  Examples: the sedative propofol would be turned off 10 minutes before an ICU doctor would test neurological responses, but she observed it took at least 30 minutes for Bill to come around.  Or a nurse or CNA who was chatty-chatty on the graveyard shift, depriving him of much needed rest, and reducing the effectiveness of the next day's therapy.  On the positive side, she noted which therapists had the best results with him, and asked to be booked with those individuals as much as possible (hello, Meadow! Yes, her real name.)  And Ayn was much kinder about it, not wanting to ruffle feathers, where I nearly yelled, "Who WAS that woman" on a new, over-perfumed, meandering therapist.

So I've learned from Ayn that advocacy doesn't have to be delivered with a stick. Um, I gotta admit I'm still working on implementing the lesson, especially when I'm tired, which is most of the time, um, but, yeah...

Power of Positive. I know when I shared the July Nine Hour Trip To Hell Failed Transfer, the details upset a lot of people. Perhaps I needed to vent, perhaps I needed to document. Then I had to let it go (after filing a complaint with state regulators).  From the event, we learned we had to visit a place before Bill would be transferred. We still aren't sure what our rights are when medical care is not being provided in a medical facility - and your loved one can't get up and walk out to a different facility. MOSTLY I learned the importance of moving on, creating good karma, welcoming each person's gift of good thoughts whether it is in the form of prayers, wishes, or the very generous "what can I do for you?" So thank all of you, once again, for your positive thoughts.

Bill: retro-funny

When Bill was in ICU, a TON of different medical personnel would pass through every day.  OHSU is a teaching hospital, so lots of students/interns in additional to various specialists.

Ayn is easily overwhelmed with crowds, and she copes by "shutting down." I got in the habit of explaining to newcomers "I'm Julie, his mom, and this is Ayn, his wife."  It also prevented any embarrassment to the personnel of thinking I was his wife, and Ayn his daughter!  Ayn does look young, 'though she's actually two years older than Bill.

One time I was very tired, very weary, so damned exhausted, my words mushed up and came out as, "I'm Julie, his wife, and this is Ayn, no that's not right..."  OMG "No, Ayn's his wife, I'm his mom."

Followed by laughter to the point of tears.

Bill: New Year's Eve Day

I was so busy burning up the old year in my last post, I forgot to talk about Bill's last activities of the old year.

This was a fairly quiet week for him because of the holiday and so many people on vacation. New Year's Eve Day included occupational therapy. Most of this was practicing getting up and down off the bench from different heights, then some stretching/manipulating the left shoulder.

Then a trip to Whole Foods, Bill's first grocery shopping in almost six months.

I captioned this, "Where's the bacon?"  But he didn't really say that.

And perhaps I was mistaken with the term "quiet week."  His daughter had three friends over for New Year's Eve.

Goodbye 2013