Bill: Tues. Nov. 26: walking, chair

Monday, Bill had the consult on getting Botox in his left arm. The purpose is to relax the muscles to get some range of motion back, and to reduce pain. The first injection appointment is next week; doc said she will start slow and monitor progress.

From Ayn Tuesday: "Making good progress with walking to the bathroom, around the bedroom, and out of the bedroom. We would like to find a regular chair for Bill to use at his desk."

[The problem, of course, is that a wheeled office chair would be nice for moving around, but how do you lock the wheels for safety in standing up? ]

"Good day of therapy. Lots of good walking in PT. Work on reducing tightness in OT. Also got Belizean chicken [at a food cart]. PT again tomorrow." In OT, he was given a "magic brush." It is slightly larger than a fingernail brush, with soft bristles, and is supposed to help with stimulating the capillaries so he doesn't feel so cold, and maybe help with the surface pain.

Before the stroke, Bill had been using a standing desk at home.  We lowered it to chair-height.

Tuesday was also sweet sixteen for Bill's daughter. Happy birthday "C!"

Bill: Thurs. Nov. 21: new OT/PT

Bill had his initial assessments for outpatient OT and PT. Occupational will see him once a week for a 45 minute session. Physical will see him two to three times a week, an hour each time. The physical therapist and assistant are women who have many years' experience dealing with brain injury patients; we had been told at RIO to ask for that background.

Ayn and I had "fun" at Safeway getting insurance billed on last week's prescriptions. I kid you not, it took a full 50 minutes. And then I had to argue with the clerk that she missed ringing one of them up. A short argument. Maybe not an argument, but a push.

I can tell Bill and Ayn are enjoying being out of the hospital, setting up their new apartment, and getting back into normal food routines. (They truly are Portland foodies, if you didn't know.)  I'm a little sad they won't be joining us for the usual family Thanksgiving, but his uncle Michael, visiting from Eastern Washington, will take them some food and get a chance to chat.

Bill, Mon. Nov. 18: Routines, new doc

Bill's home routine is becoming comfortable. After Friday's difficulty with standing, Saturday was good with just two tries, and Sunday he was up on the first shot. Ayn takes and records his blood pressure each morning before meds, and they have stretching/strengthening exercises throughout the day.  Much of the apartment was still in boxes, so they have been going through them -- somewhat of a treasure hunt. Bill is realizing a lot of his hoarded 'treasure' is unnecessary, yeah! Mom (*me*) has become a mule, hauling lots of stuff to electronics recycling, and lots of non-electronics to Goodwill.

We traveled on Portland's streetcar to Bill's new general practitioner (connected with OHSU). They have really good communications with Good Samaritan Hospital; we didn't have to repeat Bill's history, current status, or list the many meds he is taking. The only thing I didn't care for was when she felt compelled to point out he may never regain the use of his left arm. We don't do negativity! I was glad Bill got his flu shot while we were there.

Tomorrow he will have his first outpatient therapy evaluation for OT. Wednesday will be PT.

Bill decided he does not need to have the bed rail, so I took it apart. Now if I could just find the receipt to return to Bi-Mart...

Bill, Fri. Nov. 15: first full day home

First let me say insurance is being fixed. A check for COBRA is on the way from Bill, hopefully to be received by the administrators on Monday and confirmations coming back sometime during the week. Coverage will be continuous from the termination day, last week, Nov. 6.  Odd coincidence, November 6 is Bill's seven year anniversary with the company. But the change here is because it is 120 days after his leave.

Now, for Bill's activities. The day started with some difficulty getting out of bed and to the wheelchair. We're not sure if it's the change in environment, a little less activity yesterday, a little lack of confidence, or what. But after many different approaches, Ayn came up with a suggestion, I modified it so she wouldn't hurt herself, and it worked. Up Bill went, stood for a while, pivoted, and to the chair.

The rest of the day went smoothly. They got all their home exercises done (Bill is going to run out of the cognition exercises from Speech in short order), daily blood pressure check was good, and got some down time to rest. His daughter "C" was great and promises to help with more unpacking tomorrow.

Bill is home: Thursday Nov. 14

Yes, Bill is home. He still has so much work to do, taking full advantage of how much his body can heal in the first year following the stroke. Good Samaritan Hospital's Rehabilitation Institute of Oregon (RIO) helped maximize his progress for the final phase before going home.

One therapist told us yesterday, "We never thought you would come this far."  I replied, "We never doubted he would do this, and he is going to do so much more."

Gosh, if we tried to list everyone who has helped so far, we would fail miserably at remembering the names. And the list would be long. How about I just say a tremendous amount of gratitude goes out to staff Oregon Health & Science University; Marquis skilled nursing facility at Vermont Hills; and Legacy Good Samaritan RIO.  Bill and Ayn consider many of those individuals as friends.

Next week Bill will start with a general practitioner and outpatient therapies. Over the next several weeks he will follow-up with nephrology, have an evaluation by neuro-opthamology, and probably have occasional lab work.

Ayn has learned to take his blood pressure with both an automated cuff and with the manual cuff (not an easy task for many people).

Were there any problems with discharge? No, the discharge went smoothly (well, I forgot the new four-footed cane in his room; had to go back later to retrieve it).

There was one significant post-discharge issue. And one small (correctable) issue. When we went to pick up the prescriptions at Safeway, they were out of lebatelol (sp?) and said they would fill it in the morning. Um, no, he is on a very high dose of it, one of the blood pressure controls. We jumped through some hoops to get it filled back at the hospital's outpatient pharmacy (since I had to go back there anyway!). 

Here's the significant issue: Safeway's system came back with a notice, "Insurance terminated 11/6/2013." Ayn and I were in shock.  She was able to pay the full price, but she now is worried sick about next week's appointments, is there going to be a problem in continuing therapies, what about the few pieces of equipment they just ordered?  It was late in the day, so I ended up leaving messages with both the long-term insurance and with Bill's work benefits group. I can tell you there was no notice of cancellation mailed to them, or COBRA notifications. Paperwork. Fixable. Argh.

Bill is home.  Life is Good.

Bill: Weds. Nov. 13: last full hospital day

From Ayn: "Just one more day, just one more day.  Less than 24 hours to go! Had great walks, stands and pivots today. Feels reminiscent of the last day of school.  Getting set up for outpatient therapies. Not much else today. Lots of at-home stretches from OT, almost all for Bill to do solo. Exercise plan from PT and speech tomorrow. Haven't managed to get any info on prescriptions yet but nursing is supposed to go over some things tomorrow. Besaw's [nearby restaurant Ayn has been frequenting for dinner] gave me a piece of celebratory chocolate cake to take to Bill. We have quick 30 minutes each of speech, OT, and PT tomorrow before 11:00 discharge."

Bill, Sun. Nov. 10: practice run home!

Bill, Ayn, and "C" took public transit for a visit home.  (I used my car to transport borrowed equipment, plus many bags of personal items to start moving out of the hospital room.)

We have one equipment issue: the hospital's wheelchair is very large, and there is one tight corner in the apartment. It works with the footrests off and with some muscle; Monday we will check on the size of the rental chair that has been ordered -- it can't be one scintilla bigger than the hospital's chair! I'm also going to take my husband's wheelchair to see how it does on the problem corner. Maybe Bill will use it until he's back to full time walking. Otherwise, they may use the bigger chair for outings, and the smaller chair inside the apartment.

Otherwise the visit went well and served its purpose. Bill/Ayn have a new bed, and we wanted to test how transfers from the chair worked out.  Whoa, the setup was too high, so we pulled out the box spring and everything was fine. (They have the IKEA Laxeby slats, so there is plenty of support without the box.)
 
Just a few more days until the next phase in this adventure begins.

Bill, Sat. Nov 9

Ayn reports they got to rest until 10:00 before therapies started. Then they had a good day walking, with Ayn assisting again. PT gave them some good info on shopping around for outpatient PT.

Meanwhile, granddaughter "C" and I continued to prep the apartment for Sunday's home visit AND, of course, Bill's discharge on THURSDAY!

Bill: Fri. Nov. 8: family training and visits

Bill is still getting all his therapies, and they are using the time as family training as well. Ayn got to be his walking assistant; he does the work, but she is there as his guard, checking the left foot to make sure it is pointed forward, coaching him (if needed) to straighten the left leg before putting weight on it, and how to control a fall if his legs buckle so neither of them get injured.

(Here's a pointer from my husband's experience: if you are with someone who falls, the most important thing is to NOT be in a hurry to get them back up. Once he is on the floor/ground, he is in a safe position. The first priority is to get him comfortable. For example, if he is outside on gravel, put anything under hands and/or knees, whatever is pushing into the gravel. Take off a coat, throw down a book or cardboard or cell phone -- screen side up! -- or grab the bucket that is nearby to lean the hands/arms upon. Just look around for anything -- pull the floor mat out of the car, for example. Then rest a minute; you both will have adrenaline pumping like crazy! Check for injuries: did he jam a finger, wrist, elbow, twist an ankle? Stop the bleeding if he has a cut. After all those steps, then you can start thinking about how the heck to get up.)

Bill's sister visited, along with her toddler, at lunch. "She talks a lot," Bill commented, referring to his niece, "And she's very determined." 

Bill's daughter "C" made chocolate chip cookies in the afternoon, all by herself from scratch, and brought them in the evening. They were perfect.

Bill's birthday, November 8: by the numbers

Today, Bill turns 36.

Four months ago today, he had a hemorrhagic stroke.

35 years ago, he was toddling. Kind of true today again, and we're glad to see it!

22 years ago tomorrow, he had his first glider solo.  Yes, they tried for his birthday, but the weather did not allow it.  But this being Oregon, he was lucky he didn't have to wait for Spring.

Other news that's not by-the-numbers:

Thursday he practiced transferring from the wheelchair to a car. PT really wants to make sure we understand the process, because Bill is at risk for falls until he has done it quite a few times. Shifting weight, pivoting, finding hand-holds -- those are steps we all take for granted as automatic. When the brain says, "Let's go jump in the car," and the muscles say, "Huh? What, me jump?" you've got to slow it down.

Thursday was also more planning for equipment: what do we have, what will the hospital order, what do we need to go buy.  Plans are in place!

Bill will be home next Thursday.

Post-note: Bill's sister published her first book today. If you're interested, see her webpage.

Bill, Weds. Nov. 6

Bill added some backward steps to his repertoire. Do you realize how much we get used to just moving without thinking? Backward steps are harder than you may think, and he had the therapist assistant who we're --let's see, what is the nicest way to say this -- with whom we're not the most impressed. Yes, you do have to get your weight on your right leg before you can move your left foot. But he said the PT assistant was pushing him so hard, he was afraid he was going to fall over. Overall his movements improved, but it was quite the struggle.

One of Bill's activities in Speech Therapy is to make notes on the days activities. His writing has been very scrunched together. Susan is trying to get him to slow down, to concentrate on the spacing, and at one point had to put her hand on the paper with a "Stop!" Bill is really powering through the task. "Dude, bring out your perfectionist side with your writing. Slow down. Tell us what word you are going to write, and spell out each letter as you write it." It's coming along.

The first session of OT seemed like a waste. She had a handout "The One-Handed Way." Some training on using one hand is fine, but the handout was 20 years old, and she sort of skimmed it and read some things that didn't apply. The second session was much better, including more time with Dynavision training.

Bill, Tues. Nov. 5: walk/fall, discharge planning

Ayn reports Bill had "a good walk this morning, but an unplanned yet gentle trip to the floor. He's fine, just a little frustrated. His left knee just buckled. They think it might be tired from yesterday. More walking this afternoon."

I might not have mentioned every Tuesday is family conference for discharge planning. Now that it's just nine days away, there seems to be so much to do.  And Bill is making so much progress every day, which is super, but it means our ideas on what equipment might be needed at home is quite the moving target!

On Thursday, we will use some afternoon time to get trained on transferring from the wheelchair to my car.  If that works out. I know it would be easier if we still had our minivan -- slider doors get out of the way so nicely. On Sunday, Bill will have a pass to go home, including borrowing equipment to see what will work. He can leave the hospital any time after noon, and will be back by 8:00.  Oh, and Ayn has ordered a blood pressure cuff so hopefully it will come soon and we can have the staff test/calibrate it.

Bill, Mon. Nov. 4: Crane, debate, tribute

CRANE: look quick, short video. Or just watch it again. After walking 43 feet with a cane, and doing great work on controlling the left foot to point forward, then resting and doing it again ... He stood at the bar and did a "Karate Kid," standing on his so-called bad leg. This was his first attempt. I didn't capture his second try, because I was fascinated with how long he held it - a full minute. (hmm, can I do that?)

DEBATE: in speech therapy, one of his exercises was to put a list of 6 task steps in the correct order. For changing a flat tire, he had quite a debate with her on whether he HAD to take the spare out of the trunk before he had jacked up the car and removed the flat. For making a tuna sandwich, Bill put "4" next to "Add spices," but he editorialized the step as "debatable."

TRIBUTE: Bill's sister will be self-publishing a novel this week. She posted on Facebook yesterday: "Back on track. I've been hoping the ebook of my novel will be available by this Friday (11/8) because I wanted to release it on my brother's birthday. A little tribute to him, if you will. And despite some recent hiccups, it looks like we'll be able to hit that deadline. Hooray!!"

Bill, Sun. Nov. 3: walk, streetcar

Once again, I am having problems loading a video. So imagine yesterday's video, but instead of holding the hallway rail, Bill is using a "quad-foot" cane on his right side. And smiling/waving to the camera.

 



In OT, Bill did a couple of interesting activities. One was "Dynavision," a board about 4' x 4' with a starburst of 1/2" push buttons. Just one of the buttons lights up at a time, and Bill has to find it and push to turn it off. Then a new one, and so on. The goal is to minimize the time to find it, and trains him to look to all edges of the board, especially to his left and down.

Another activity was the computer.  He and Ayn have used their laptops, iPads, mini, and cell phones a bit. But in OT he got to roll up to a desktop with a standard monitor and keyboard. Typing is a bit difficult one-handed, so they are going to coordinate with Speech on trying DragonTalk. 

In the afternoon, we went on Portland's Streetcar. That was a fun outing for Bill. I'm not a great fan of the streetcars because they are so darn slow, but that was a good aspect for our trip. It went by their old apartment, and close enough to the new apartment (we could see the slope from a streetcar stop was navigable to the new place). We did the whole loop, covering both ends: south waterfront to Nob Hill (NW Portland, 23rd and Marshall).

Bill, Sat. Nov 2: walking the hall

Forgot walking between some little parallel bars. Let's get out in the hallway! (His daughter "C" is to your right in the video, very excited.)  So what's next, tackling the stairs?

It's about 35 years, almost to the day, since his first steps. He's doing good work, and I'm one proud mama.

Bill, Fri. Nov. 1, walking at the bar

 

This video is from Friday afternoon PT, imitating squats.

 

I missed seeing, and therefore couldn't record, some exciting movements Friday morning. A little background for perspective: his walking in the suspension harness Thursday was so-so. The harness keeps him very safe, for sure, but it doesn't allow for a natural feel of walking. I mean, come on, having tight straps around your crotch and a corset-like wrap on your torso - ugh. Bill's left leg wasn't quite strong enough yet to overcome the harness's pull to the side, and he didn't get a good step down on that leg.

 

But on Friday, first, Ayn described OT as using a vibrating bar on Bill's left arm, and he was able to clench/unclench his fingers a bit. But more exciting:

 

Second, in PT, Andrew had him stand at the parallel bars. Then Andrew asked if Bill wanted to take a step or two. No harness. No problem. He was able to get a much better walk, the distance is about 10 feet, and with a little rest in between he made the trip three times. Bill said it also helped that it was just Andrew, without a second person also giving him too many overlapping directions.

Just venting: problems posting video

I have spent a few unsuccessful hours trying to post video.

 

And I have a new laptop, an HP Pavilion Touchscreen, which was supposed to make life easier. Sigh. Windows 8, hard to back out of things, OR sometimes it "swoosh" goes to the Start screen, leaves things open (supposedly for quick access in future use) but already seems bogged down and slow to respond.

 

The specific video problems: Blogger doesn't want to take in MP4 videos, plus it was over 100 MB. So okay, there are lots of utilities to convert to an acceptable format, but how do I edit the size? Supposedly through Windows Media. Oh, but first look, there's a utility on this new laptop for "CyberLink Power Director." But oh wait, now that I'm into it, there doesn't seem to be an option to rotate -- I took the video in a 'portrait' orientation because it shows Bill standing and walking. Oh, and now wait again, because when I left the utility, it seems to have deleted the video from my phone. So now that I've found Windows Media Player (WMP), I don't have the video. And videos from last week show "0" size in WMP, and won't drag to the playlist. If I pull it up in File Explorer and double-click, it is run using an Xbox utility.

 

So I will keep trying. If I'm there in time for a walking session today, I will at least try a "landscape" video.

 

All Saints Day? I'm not feeling very saintly! Must think happy thoughts, good karma, calm water...