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.