Bill: p.s. on Dec 27 car trip

I forgot to mention we had a bit of a struggle last week getting back into the car after OT. The car was in a spot with a slight uphill slope from the back-to-front of the car -- I mean, really slight, but noticeable. Bill's selected seat was to be the rear passenger-side seat. There was also a slight tilt downhill from the passenger side to driver's side. So when Bill got out of the wheelchair and took a bigger-than-I-expected step forward, he was right next to the car door. His next step needed to be backwards, with a little pivot, so he could sit in the seat before swiveling in.

Easy, right?

No. I've worked with mobility issues a lot, so let me try to break this down. When you have a mobility issue, you can't rely on the old muscle memory, so each motion has to be broken down and planned before executing. Oh, and you also don't trust everything to go smoothly, so the fear of falling freezes movement even more. 

So imagine you are near the car seat, your target, but not close enough. Your face is in the car door. You need to lean forward even more, feeling the downhill slope behind you. You need to put all of your weight on one foot or the other, and on the cane, so the other foot can move. Just for fun, take a fistful of blood pressure meds a half hour or so before you need to move, because having some light headedness kick in IS fun.

You guessed it, Bill's knees started to buckle. Ayn had the foresight, or instinct, to push his downward momentum toward the seat. At least he was mostly braced against the car instead of going to the concrete. (Please forgive me if it's cement rather than concrete. Can we just agree it's a very hard surface?) After resting a bit in this crouched/braced position, we were all able to push and pull until Bill was in his seat.

Chalk up another learning experience.

Bill: Christmas week, Botox follow-up, OT, car travel

Botox follow-up: The botox injections in the left arm have helped some, especially with the elbow and some with the thumb. He is scheduled to have another round in March.  Oh, and for this appointment at Good Samaritan clinics, I picked up Bill and Ayn in my car (fondly known as "GAAK"). First car trip in a very long time.

Occupational therapy: Anne-Marie did progress charting on his left arm. The range for the elbow was remarkable, but she is concerned about how tight his shoulder is, so she will send a note regarding botox, asking for some concentration on that joint.  Well, it's not the joint itself of course, but the supporting muscles/tendons.

On Christmas day, I again picked up Bill and his family for the trip to Grandma's.  I'm so glad they were able to go, after missing Thanksgiving. After wheeling him to the front of the house, he was able to navigate a small step up -- yes, first time for a step -- and a challenging threshold. He played a rowdy game of "Cards Against Humanity" with his sister. His uncle "JR" last saw him in late August, so a remarkable change in four months. And his aunt Joan was impressed with Bill's strong voice.

Bill: Sat. Dec. 21: family; retro-fun

Yes, Bill and Ayn had a successful family get-together. It was a drop-in event, so not everyone was there at the same time, but the siblings (Bill, Ben, Brooke) did all cross paths at one point. Grandma came just (JUST) after Brooke and her little family left - oh, no!

So retro-fun: Ayn and I have talked about filling in some downtime with retro-fun, as we remember silly things we've done are that have been said along this journey.

"Don't kill the Marmot!"  You all know Ayn never left Bill's side. During his stay in ICU, she slept on the waiting room floor.  When he was on floor 10K, she was in his room and able to use the window-seat bed area.  We rotated her bedding between two sleeping bags, one of which is the Marmot brand (from REI, if it matters). The first time I was taking it home to wash, we were desperately trying to find the cleaning instructions, because it didn't have a tag.  Bill gave a half-grin and gave his instruction: "Don't kill the Marmot!"

"What am I doing?"  (A recurring theme.) Bill wears an air cast on his lower left leg to support the ankle, keeping it from turning.  I think I posted a picture at one point; it has a tie-dye-ish pattern. Ayn found herself one morning trying to put it on her own leg. Her first thought was "This doesn't seem to be right, hmmm, what's wrong with this, hmmmm, what am I doing?"

Bill: Fri. Dec. 20: PT and Solstice

I'm sure Ayn would like me to say "Happy Solstice" - almost. Officially it arrives here 9:11 Saturday morning. To celebrate, Bill and Ayn are having a few family folks over this evening, with goulash available! A very nice winter dish indeed. (A few folks = seven of us, at most.) Their other reason to have us over is that they are not sure they can make it to the family Christmas gathering - insert sad face.

Bill had PT Wednesday. Andrea, "Andy," said his walking is coming along well. We appreciate the improvement in HER comment, compared to last week "I didn't think your walking would progress." No limits, sweetie!

But that evening he had a "slow but unexpected trip to the floor." His knee gave out, but he is okay. Luckily two friends were visiting and able to help (and one is a nurse). Bill was tired, so they canceled Thursday's PT, and spent the time exercising and reading.

Hope everyone has a good weekend. I might not have anything to report until Monday, after his botox follow-up appointment.

Bill: Weds. Dec. 18: march, kick, clam, slide

A new version of standing! Last week's PT had Bill stand without assistance. On the edge of the table, lean forward, lift, slowly sit back down.

Unfortunately last week he didn't have his first speech evaluation (first outpatient visit for rehab), because Bill and Ayn canceled - ice on the sidewalks!

Also unfortunately, they had a difficult time trying to get prescriptions refilled. One problem was a missing script. The nephrology doctor said she wasn't changing anything, but only gave papers for four of the five meds. Standing at the pharmacy, Bill was getting bounced in phone calls between nephrology and his general practice doctor. Then pharmacy said their insurance was canceled. Wait a sec, we got all this straightened out last month! Bill was on the phone again, this time with United Healthcare, and was told that when he went on COBRA, the group and member numbers changed. So the billing went through. Oh, and they were out of labetalol, and could get it the next day.

This week, Monday's PT was a once-every-three-weeks evaluation. His assigned homework is all for leg and hip strengthening:

• March: sitting in a chair, lift the knees as high as possible, with controlled descent.
• Kick: still sitting, keep the knee down but lift the foot. Ayn is tasked with holding her hand out as a target!
• Clam (clamshell): lying down, with knees bent up, let the knees drop to the side and PULL/squeeze 'em back up.
• Slide: again lying, extend the leg out and slide the heel toward the butt, keeping the knee pointing up.

Bill had a follow-up appointment with his general doctor, and lab work. The doctor asked what his long-term plans are, does he plan to go back to work. Bill said yes, of course. It was good for her to ask, as that doesn't seem to be brought up often enough! And she didn't drop it there, but was encouraging about different options to explore if his left arm still limits his ability to use the computer.

Keepin' on keepin' on.

Scary, stupid, silly things

Throughout the last five months, Ayn and I have done some really weird things once in a while. We blame it on being exceptionally tired and stressed; we say we left our brains in Neuro ICU.  I didn't keep a list, so I am SURE there are many examples permanently gone in the winds of time. You understand: if I left my brain behind, then where the heck are those memories, right?

Scary: let's get these out of the way. And I've already told my Mom, so this won't freak her out. Otherwise you would see a big flashing warning of 'Mom, don't read this.' I ran a red light. Twice in fact. The first time was after the terrible, horrible, no good, very bad transfer in July. As Bill was being loaded to be taken back to OHSU emergency, the ambulance driver was very clear: "We have certain protocols, and we will be running lights and siren. But don't try to follow us. Just drive safely and we will all get there at some point, okay?" 

Ayn and I left before the ambulance. But on 82nd Avenue, they passed us. (Side note to local folks: Banfield Freeway was closed for nighttime paving, so we were on surface streets.) And I had every intention of not trying to keep up with the ambulance. Those strobing and flashing lights are annoying anyway.  Halfway through the intersection at Halsey, I realized, "Holy cow, this is a red light." Luckily the person starting to turn left, across our path, saw I was not stopping. Light traffic, 3 in the morning, and at least one aware driver.

The second time was in Northwest Portland, leaving Good Samaritan hospital. A weeknight, I believe, maybe 9:00 or so. Same sort of realization, halfway through the intersection, "That sucker was red!" Thinking back on what happened, I remembered that there are two businesses in the block, or the prior block, with neon red signs. I think in my brain the red traffic signal just melded into the red business sign. Egad.

My third example of brain-gone-scary: I accidentally took my husband's medications. One evening, around 6:00, I offered to get his next dose of meds for him. Brought them out from the bathroom, stopped at the kitchen, thinking, "I'll just fill my water bottle, because I need some water anyway, and he can use it to swallow his meds." I took a drink of water, walked the few steps to his chair, somehow swallowed his pills during those few steps, sat down the water and declared, "Oh my God, I just took your pills. I have to go try to throw up." This dose was two pills, and neither med was critical to putting me at harm. But wow. Can guardian spirits have heart attacks? Because I'm sure I am pushing the limits on my little gal. Can guardian spirits ask to be reassigned?

Stupid. Certainly my situations above qualify as stupid, but they crossed the line (way past the line) into scary. One silly-stupid example was when I needed to fax a form to an insurance company. We were at OHSU, and we could have faxes sent from the nurses station. I walked everything over, and asked her if she could return the papers to us when it was finished, "We are in room 805." She looked at the paper and at the status board behind me, seeming very confused, so I apologized, "I'm sorry, I told it was okay to have faxes sent from here."  She said, "805? Not room 26?" Oh man, she was right. 805 was Bill and Ayn's apartment number at the time.  A good laugh was had by all.

Silly. The best "silly" comes from Ayn, so I hope this is okay to share. While Bill was at Good Sam, and things were going well, Ayn texted me one evening. "I left the room to go get something from the cafeteria. I was thinking how well Bill is doing and he's going home soon. The cashier asked 'How are you this evening' and I said 'I love you.'!"

Bill: Mon. Dec. 9: five months; tram ride

Yesterday was five months.

Today Bill had another appointment with nephrology/hypertension.  Here's a picture of the trip to the appointment.

(No, there's not a pom-pom on his hat. We had the scarf wrapped around and over his ears, trying to keep warm in the b-i-t-t-e-r cold.)  I think the literature says the tram climbs 3,900 feet from the waterfront to the hospital landing up the hill.

The doc was pleased with the blood pressure (and she really liked the on-line documentation Ayn kept -- she just showed her on the phone). No changes for now.  We asked about the possibility of the genetic testing, because their clinic, two months ago, was checking on whether insurance would cover the test. Oops, someone dropped the ball, but it was after the okey-dokey came in, where the outside lab didn't follow-through on the approval.

Tomorrow Bill has speech and PT. They will drop off the refill orders -- oh, the short version of a side story on the downtown Safeway pharmacy is "avoid them; they treated Ayn horribly."

Wednesday is a first appointment with the neuro-eye doc. More PT Thursday.

On another note: thanks to everyone who helped think happy thoughts for Bill's grandma's surgery today. She doesn't want details published for those who don't already know, but it went well, no surprises, she will go home in three to five days.  And a HUGE thanks to my Aunt Char (and Uncle Tom) who will stay with her for a few days.

Bill: Thurs. Dec 5: Jumping through hoops (sort of)

Jumping through hoops? Does walking through hoops qualify? Here Bill is given a target, AND she timed him. The first time through the course, he took 27 seconds. He got it down to 20 seconds. You will notice he doesn't have all the holding/pushing from the therapist from prior videos!

Backing up is harder. And the red sleeve on his left arm? That's called a shooter's sleeve. It helps calm the overstimulation his skin has been feeling (she said it is similar to swaddling a baby - awhh).

Bill: Mon. Dec 2: Botox; news from Thanksgiving

First, Bill's 'little' brother turned 30 yesterday. A Very Happy Birthday to Ben! And their brother-in-law, Nate, will turn 34 tomorrow.

Second, Bill had his initial Botox injections today. The process was fairly complex, with probes attached to his arm and to the injection port, giving noise feedback on where the muscle activity was (the tension that needs to be relaxed, so he can regain flexibility and range of motion).  At least a half hour to inject several locations. Bill will have an appointment with his head RIO doctor in three weeks. They will look at the impact, prescribe some intense OT at that point, and look at further injections (if called for) in another month or so after that.

In all, it took a large part of the day. We all left the apartment about 11:00 to catch the streetcar for his noon appointment. Prepped with numbing agent, waiting, waiting; out of the office 1:30 or so, lunch, and back at the apartment 3:00. We took care of three administrative things.  In case you're wondering how the war on paper versus non-paper is coming, today's score was 2-1.

Ayn called at 7:30, letting me know he had a gentle slide to the floor. Some difficulties getting back up, but with daughter C's help, they were able to manage. Eventually.

I won't see them tomorrow. Luckily their PT and OT appointments are after lunch, so they won't have to deal with the predicted cold weather early in the morning.

On another note, we had news on Thanksgiving that a relative will have surgery a week from today. We have tons of relatives, and those who should hear the details have already been informed -- I won't go into that here. There is every reason to expect a positive outcome. Ayn's comment when I told her was, "Gawd, I hate 2013." Ditto that. But we are emerging stronger, focused on and valuing our family and friend connections.  Here's giving thanks to each and every one of you.

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...

Bill, Weds. Oct 30: no dope; "tie-dye" boot

Hooray, he's back from dopey-land. No more baclofyn, thank you very much. No more bug-eyed stares, slurs, sleepiness, loss of focus. 

Also officially nixed the passing comment of 'maybe trying a power chair' made by one of the PT's. 

Started talking about other equipment needs (probably a shower bench/chair, not sure about grab bars or suction bars). The hospital did the paperwork for a wheelchair parking permit, but that doesn't apply to Bill and Ayn so much. They went car-less more than a year ago, using public transportation or Zip Cars. But if Bill's not driving, and Ayn doesn't drive, do they really need a parking permit? I guess maybe if I shove them in my car to go somewhere, although we already have a permit (my hubby's).

Explaining this picture: the white is Bill's sock, and the 'tie-dye' part along the back and on the bottom of his foot (secured by two white velcro straps) is  a very thin but rigid plastic boot (half boot, I guess) to keep him secure while walking. 

Bill, Oct. 26-28: dopey, more standing, discharge expected 11/14

preparing for takeoff

 

In spite of these nice pictures, it was a bit rough over the weekend and Monday. One of two meds Bill was started on last week seemed to really knock him out, zombied, more slurred speech. The docs agreed to back way off (from 15mg to 5mg) and that seems to have helped. Ayn and I were becoming concerned that it was his first real setback, keeping therapy from moving forward. But much better now.

Discharge is planned for November 14. 
From the date of The Event, that is 129 days.

Asking for your input: PT mentioned for the first time they may try out a power chair. We had been told previously that once someone goes that route, it often slows (or stops) progress towards walking. Ayn and I are thinking it's fine to use a manual chair as needed, and we would keep working with him (thru therapies and at home) on standing and walking.  Seriously, anybody with thoughts, especially if you have had anyone in this situation?

Bill, Fri. Oct. 25: talk, strength, roll, stand

What, you want more words than just this big smile? This big standing tall smile?

Okay. Today wasn't as packed as yesterday. I missed the morning session where the doctors did rounds and had him at the parallel bars to stand and take a couple of steps.

I also wasn't at his first half-hour for Speech in the morning, but in the afternoon she had him do a "listening" exercise. She plays a recording of a man saying numbers, "9..8..7..6..1..2..5..4..5..6....."  Bill is holding a clicker, and any time a number is one more than the previous number, he clicks. So he clicks on the "2" because it is one more than "1." He clicks when 4 goes to 5, and again when it goes to 6.  It becomes a little difficult after a while because the guy's voice is pretty monotone -- I found myself drifting.

Then she had him do some work with menus. The purpose was to scan for information. What kind of crust do they use? (Thin) How much does a small cheese pizza cost? How much is a 12" with pepperoni, olives, and green peppers? Then a different menu was hotel room service. What time can you get room service, etc. She continued having him make notes on this days activities.

Physical therapy had various movement and strengthening exercises: bridge, crunches, knee squeezes.

Most exciting for me was "nursing" time which resulted in the picture above. It is a standing frame, and he is pretty strapped in, going for 15 minutes.

The smile is all natural, no coaxing required!

Bill, Thurs. Oct. 24: paraffin dip

Gosh, after yesterday's big post I really don't know much about what happened today! I was running a lot of errands (including the joy of visiting the Social Security office; three security guards seems a bit much).  Hubby and I stopped by the hospital twice, but not to see therapies.

Paraffin dip.  Bill said, "Touch my hand." It was really smooth. His left hand (not moving) had a paraffin dip. I asked if they were trying to protect it, worrying about skin breakdown.  But no, it was for warmth to try to relax it. This is the side wanting to curl: arm, hand, fingers -- very tight. They also just started a med, baclofyn (sp?).  Bill's mneumonic: no, I'm not turning into a fish (fin on the back, baclofyn, get it?). This med is supposed to help relax muscles, get them more flexible/mobile.

Tomorrow I will get ya'll a better update, okay?

Bill, Weds. Oct 22: stand walk talk Yahtzee!

What a busy day! Bill's days have all been busy at the new rehab, but this was my first chance to see most of it.

8:00 - 9:00: OT with eating, bathroom, teeth, dressing, etc . Bill has to do most of the work.

9:00 - 10:00: First the harness for a stand and walk.  And then standing, no harness. Pretty cool.
 (Honest, I have video but once again I am having trouble loading it)

10:00 - 10:30: recreational therapy. The four of us played Yahtzee -- it makes you think in three directions.

10:30 - 11:00: speech therapy. First he has to write notes on what his activities have been so far in the day. Today's handwriting looks markedly improved from yesterday's notes. This challenges him to remember who he worked with and what they did. Then there was a whole series of tongue exercises (who knew there could be so many?), and sound patterns. The time just sped by.

11:00 - 11:30: neuro psychologist. PT expressed some concern that Bill seemed to be nervous or holding back on walking. We explored many avenues: because it's been three and a half months, how much of his muscle memory needs to be re-learned? Because he had blood pressure drops until very recently, how much was holding back because he is expecting to get dizzy (although it's under control now)?  How much of what they are seeing as "nerves," from a shaky/bouncy right leg, is really just part of the brain injury and temporary (similar to Parkinson's tremors)? The doc asked if Bill was nervous, as his leg was bouncing, and Bill said not at all. How much was Bill holding back because there had been three near-falls, trips to the floor, from therapy at the prior facility?  The doc assured Bill that in his 23 years at this hospital, never has a patient been injured during therapy. Yes, they may have had a controlled  trip to the floor, but no injuries.  Overall, the doc encourage Bill to have faith that he could cut loose, just go for it with walking. I made the point that it was like cutting loose from the tow plane when he was 14 and had his first glider solo. Well, of course that led to a longer discussion, and the doc was very impressed. And he walked away with a Bill-specific phrase to be used in the future: we're going to cut loose with the glider.

I had to leave for a few hours, so Bill had lunch, then another couple of hours between OT, PT, and ST.

Bill, Tues. Oct. 22

We had the first family conference -- prelim estimate on discharge is three to four weeks.

OT is concentrating on ADL (activities of daily living) and keeping his left arm/wrist/fingers loose.

They are working to get a brace or ortho boot for his left ankle. It needs to be protected because he could still twist it without realizing any pain.

I don't remember exactly what speech said, sorry! Good cognitive, good short term memory, maybe some work to do on attention, but they are impressed at his functioning.

The group included Kerry, who is the coordinator from OHSU (I think rehab navigator was her title).

They asked if we can get picture and measurements of the bathrooms in the new apartment -- for planning. It's too early to know if there will be equipment needs, but in the meantime they can work with him in his current capabilities.  I hope the building can give me schematics so I don't have to measure.

Tomorrow I will be there early, so I'm hoping for pics and/or video!

Oh, we realized today was the first Tuesday in a LONG time that they haven't been driven crazy by The Leaf Blower. Right outside their window, and the fumes would seep in, yuck.

Bill, Sun/Mon Oct 20/21

[A compilation of texts from Ayn:]

Sunday: Stood for seven minutes, no dizziness, and Ayn got a big hug.

Monday: We are reasonably mental healthy according to the neuropsychologist.

Bill did 26 minutes standing in the frame, no dizziness. Plus he had a stand in the room, with the bed rail, to get pants on.

He got clearance to go outside to the garden (in the chair). Recreational therapy is talking about a possible dinner out (a group event) next week.

They have 30 days left on insurance for in-patient rehab.

Tuesdays are a weekly family conference, with a focus on discharge planning. "What do we have to do to get there?"

Bill, Sat. Oct. 19: new facility activites

[Happy birthday to Bill's Aunt Joan.]

Bill had lots of assessments today. Speech said cognitive stuff is really good (which we already knew). She will work on vision, reading, and general problem solving.

He had a good stand in physical therapy (PT). There was some dizziness after awhile, but he was up for a good bit and pressure appeared to not go down. One goal is to increase standing time and increase skills with the slide board.

Occupational therapy (OT) is sorting out how to help is left hand, sounds like she wants to get a better brace. Because he does not have much movement, except from the shoulder, the arm naturally wants to curl, as do the hand and fingers. It's very important to keep everything flexible. OT also helped with morning shower and dressing (he has to do as much of the work as possible).

The therapists all seem good and approachable so far.

He got "surprise" food today, not what he had put in for the orders yesterday.

Blood test was almost normal, meaning the kidney function is getting back closer to normal levels.

The chair is less stressful since they are able to more quickly respond when he needs to get out.

Bill, Fri. Oct 18: good transfer; progress

Yes, he had a good transfer. And to PROVE he was excited:

As I posted on Facebook, an odd combination, but the Giants PJ's were warm for a cool morning. Cousin Regan said, "Every day is a great day to wear Giants gear." Lots of other comments and encouragement poured in!

Everyone involved on his new team does their own assessment. He saw two doctors: one is the intake doctor, she did a thorough review; the other will be his team doctor, and he just introduced himself for now. During the intake, she did just a few cognition tests. "What year is it? What month is it? How are an apple and an orange alike?" He said they are both round (my first thought was they are fruits -- both acceptable answers). "How are the Mona Lisa and a symphony alike?" Ayn and I looked at each other with raised eyebrows, stumped, but Bill answered, "They are both works of art." Oh.

Speech therapy had him move his tongue in all directions, repeat some weird sounds, cough. She brought his lunch and watched how his whole coordination, movements, swallows worked (meatballs and spaghetti).

Physical therapy and occupational therapy (PT and OT) observed movements. They had him do a slide board transfer  from chair to bed, but completely different from what he had done before. Instead of moving toward his strong side, where he would scoot and pull himself, he moved toward his weak side. He couldn't pull, and the intent was to have him lean away from where he was going, get the weight off the butt, and push himself along. Another new instruction was "head down," which also gets the weight off the chair. When the transfer was complete he was lying down, OT said, "You're pretty tall."

PT came back later to do more specific muscle assessments. For the first time, I saw that he has another movement in his left leg. The first movement had been a lift, if you remember the video. Now he can also pull the knee up, and has pretty good side-to-side movement. We hope next will be some ankle flexing and toe wiggles. But I was surprised to see he has no feeling in the left leg. When I've seen him being assessed, they would brush each leg and ask, "does the left leg feel the same or less?" When he said "less," he didn't say "I don't feel it," and I think he didn't realized there was nothing, because he was seeing the touch.  During this assessment, she had him close his eyes. Overall it means there is a safety issue, where he could twist his leg/knee/ankle the wrong direction, or he could rub against something rough.  He will need to watch what he is doing when he moves, and we will have to be the backup protection.

Saturday will be busy for him! I won't be there, but Ayn promises to text a lot. I can compile/edit her comments into a post.

Bill, Thurs Oct 17: 100 days, ready to transfer

Yesterday was 100 days from The Event.

Tomorrow is confirmed: Bill will transfer to in-patient rehabilitation. Lots of work ahead, three to five hour a day in therapy. He is SO excited, you should see his BIG smile.  Oops, I guess I should have snapped a picture so you could see for yourself. 70 days at the current facility. Bill and Ayn were pretty settled in, so Ayn has been busy packing up over the last couple of days.

Staff at his current facility are excited for him. They have all done a great job in this part of the journey, and in preparing for the next steps.

We called back Casey Eye Institute on the referral for a neuro eye doctor. The doc who was recommended also sees patients near the in-patient rehab -- but it is a separate clinic, so Casey Eye has to fax the materials and we will wait (patiently) for the call.

Bill, Wednesday Oct. 16: ready to transfer; eye doctor

Yes, Bill is ready for the next step before going home: in-patient rehabilitation. Sounds like a step backwards, right, going to a hospital? Nope, that's the design. Intensive in-patient rehab, with at least 3 hours and a goal of 5 hours to work the work of getting ready to go home. The transfer may happen Friday. Yikes and Yippee!

Meanwhile, Bill does most of the effort on his bed-to-chair transfers. And I got to see him "drag" himself down the hall in the wheelchair. Bill called it 'drag.'  I call it "pull-and-roll."  I hope I can get a video tomorrow. He locks his right ankle under his left ankle to support that still-weak left leg. Then he walks that right foot: forward, press down and pull, while also using his right arm to roll.

While he has therapy in the current center Thursday, Ayn and I will be busy with logistics for the transfer: do we book a time for the Tri-Met lift? Does he use his current chair for the transfer, and we bring it back? It belongs to Marquis, the care facility. Or should I bring the wheelchair my husband occasionally uses? Disability insurance probably wants to know about the change -- I swear I heard a "tsk-tsk" when short-term disability found out he had gone from the hospital to the skilled nursing facility.

Ayn got message from the neuro-eye doctor. You may remember we asked the stroke center last week for a referral. So cool, and they have appointments not only at OHSU but at the hospital to where Bill is going.

Bill has been busy using his new mini-iPad. I took Ayn for a couple of quick errands, and Bill "Face Time'd" her while we were gone. They are so cute together. Let's see, what else does Bill do for fun? He tries to clean the board on Jeopardy every night. He's interested in getting some logic puzzle books. And they decided to give Lumosity a try, the brain training games. I was wary of it because they do so MUCH advertising. But occupational therapy said they've heard good things.

Bill, Fri. Oct 11: Appointments

This morning was another trip on the Tri-Met Lift to OHSU.  It was his three-month follow-up with the Stroke Center, and the last time they will see him. Nephrology/Hypertension will continue with him for blood pressure control.

Dr. Kory H was very impressed with Bill's progress. The last time he saw Bill, he did not have any real strength in his neck or torso or limbs. And Bill's communication was very limited, as he got the trach out the day before he was discharged.  Kory went to get Dr. Clark, the department head, who came in VERY smiley. Dr. Clark encouraged Bill to work very hard over the next nine months to get the greatest recovery.

Nurse Monica went through cognitive tests, which Bill aced of course. Then Bill went for a CT scan, which is the final part of the drug study tests.  They needed assistance from the "lift team" to transfer to the scanner, and who came but his old buddy "Z!"  Bill and Z are the same age. We were happy to see Z, and Z was very thrilled to see Bill's progress.

We won't know until the end of the study (or maybe they said at 6 months) whether Bill had a placebo or the actual drug.

This should be a quiet weekend. I might not have any news to post. Although I have been saving one side article in my back pocket...

Bill: Thurs. Oct. 10 was Alpaca Day

Sorry not the best picture; those little beasts can move quickly!

Bill, Wednesday Oct 9: Circus Day

Bill, Tuesday Oct. 8: Three months; stand; shoes

Three months. And Bill's birthday is one month from today.

Therapy had Bill do a stand-pivot to get from bed to chair. The stand part was great, a long hold, and Bill said he didn't get dizzy! That will mean a lot in being able to progress in therapy.
Bill has new shoes.  He has lost so much weight that his old shoes were too big -- a lot of the bulk was water retention from high blood pressure, and he had much swelling in his legs and feet.
The trick was this: what size to get?  Ayn had the great idea, let's start with a half-size smaller than his last shoes, and get another couple in decreasing half-sizes.  Keep what fits, take the others back. And since I live relatively close to the Woodburn Premium Outlet, it was easy to hop into the Adidas store. Yes, I could have chosen Nike, Vans, Converse or one of 15 other shoe stores. Adidas was closest to where I parked!
Therapy seemed happy with the choice. Light enough, but supportive, enough traction without being too sticky.
I will exchange the other pairs for colors.  Bill is interested in getting one in neon yellow and another in red.

Bill Thurs. Oct. 3: Update on our complaint re failed transfer

Bill had a pretty normal day. This post will deal with more administrative matters, but I know loyal readers were very (very) upset with a prior event, so here's an update.

More than two months have passed since the Great Failed Transfer to a "specialty hospital."

And it was about a month ago when we got a billing from said hospital for $250 co-pay on Bill's "care." Ayn asked me to write a letter, based on information in my complaint to the state regulators, and state that we didn't believe any billing was warranted.

Last week Ayn received a voice mail from "Claudia," who said she was new to the hospital as the Director of Compliance and Risk. We ignored it. She left another message this week, so I called her back today.  It was a very interesting conversation, and she took the time to make sure she understood all of our concerns and the background of Bill's situation. In my complaint, I emphasized the issues around medical care because the other issues (how we, the family, were treated) aren't really "billable" issues. But Claudia expressed her most vocal concern with Ayn being kicked out at 2:00 in the morning: "Well, that's just not right at all."

In the end, she asked me to express to Ayn her most sincere apologies, and to convey "My job is to fix this."  I restated that our goal is to keep other families from going through what we experienced. claudia said many changes had taken place since the end of July and early August, and she was part of that change.

Claudia said our request to waive the insurance copay would have to be addressed to the insurance company. I said I didn't understand her answer well enough to carry it back to Ayn, because the billing was from the specialty hospital. She checked on it, and called me back later, saying "I have asked the billing office to remove that charge, and I have cleared it with the fiscal office here. I don't know how long it will take to process, so you might see the computer generate another bill, but be assured you don't have to worry about it." I thanked her for her efforts.

Bill, Tues. October 1: family history

I finally heard back from one of Bill's blood relatives "on the other side," a son of my first husband. This young man is probably about 31 years old; I'll call him Junior. He had not realized until now I sent a message; apparently when you are not friends on Facebook, it goes into an "Other" purgatory, a spot I don't even see on Facebook.

Background: Junior called Bill's grandma a couple years ago, wanting to know if Bill would connect with him. The answer was no. The other side is a group of strangers to Bill, as he was a baby when his birth father and I divorced (nasty and scary events I won't detail here). My father was the main male figure throughout Bill's life. Bill was inspired to change his name in high school, and has been "Bill III" nearly 20 years.

Getting any meaningful information from Junior was difficult. He still wants to connect with Bill, so his answers to my questions kept going sideways into how many kids he has, where he lives, where his dad lives with his stepmom "Z."  His dad does have high blood pressure, (and anxiety, he felt compelled to tell me), but Junior didn't know how long he had it, how high it had been before medications, what meds he might be taking. But his sister, who would be 33 or 34, has a clot in her brain which they are working on dissipating through blood thinners.

I told Junior there would be genetic testing, and I would be sure to let him know when we have the results so he can let his side of the family know if there is a risk. "You really don't want to go through this."

So dear Readers, do you know your blood pressure? Find out, and if it's elevated, follow your doctor's directions to take steps to control it. You really don't want to go through this.

Bill, late Mon, Sept. 30: blood test; stand-pivot transfer

Bill continues to have weekly blood tests. I didn't mention the results from last week, which showed his creatinine level was up -- that is one of the markers of kidney stress, but we weren't too concerned because the others numbers were all in the normal range. This week the creatinine is still up, and everything else is still good.

Today was another therapy advance: a transfer from bed to chair via a stand and pivot! Bill had a pretty proud grin on his face when he told me about it. Maybe I will get to see (and maybe record) him in the act sometime this week.

Bill Mon. Sept 30: no big changes

Hey, sorry for the lack of posts, but not a lot to report.

Bill continues to have therapies. Friday resulted in a slow slide to the floor. His latest wheelchair is wider than the prior chair. It didn't fit the same for the "ratchet" standing machine, so when he went to sit back down, it was further back and ... down he went, at least mostly down.

Quiet weekend.

Bill Thurs. Sept. 26: RIO? Fingers?

Yes, yes, I know and many have asked so here is the answer. The question: what happened with the RIO (intense in-patient rehab) meeting on Tuesday.  It didn't happen, which is fine. The intake coordinator talked with Bill's current therapists, and they agreed to put off the discussion for a while. Because Bill's blood pressure has been dropping when he stands, they think that might limit the amount of therapy they could do each day -- they want to shoot for at least 3 hours, and more like 5 hours.

His meds have been adjusted again, in coordination with the OHSU doctors, and it looks like it is helping.

Fingers? What's the headline about fingers? He has some movement in his LEFT fingers now. Yee-haw! Different than how the left leg movement started, which was from his hip. But what the hey, we'll take it. Tiny little movements, but a waterfall must start somewhere.

Bill, Mon. Sept. 23, going to standing

Hey, I got one posted! But more "hey," you get to see Bill standing. Sorry for the poor quality.

This was his second time up, so he was a little more tired. His blood pressure is still dropping when he stands, so the doc is working to figure out a happy medium. (For you med-savvy types, the pressure went from 124/xx pre-stand to 94/xx standing.)

Bill, Mon Sept 23: vision doctor

Remind me to get more information on this, because I'm hearing it second-hand! There is talk of getting approval for a specialist, a "behavioral eye doctor." Treatment would help for the left-side neglect, where Bill doesn't see left of a certain point in mid-field. I believe he said there are other field of vision issues (maybe low spots?).

More info later. Don't let me forget, okay?

Bill, Sat. Sept. 21: work and patent

Today Bill was interested in what is going on at his work, and wanting to stay in touch.  And he said he needed to get the paperwork for his patent.  Patents. He is getting two patents -- the first I've heard about this!  If his grandpa were still alive, he would be SO proud. Don't get me wrong, he loved all the kids regardless of accomplishment. But he was an engineer, so the patents would really tickle his logic side!

Bill: Friday Sept 20, "Med Dizzy"

Short update from Ayn: Thursday was a better day. Blood pressure is good overall, but still drops when they have him stand -- he gets dizzy, and can't stand for long. The doctor further reduced medication Friday.

By the way, Bill's on-site doctor, Bonnie Creitz, is wonderful. She is "semi-retired." We've seen her put in 60 hours a week at Bill's facility, plus she volunteers at a clinic. Goodness, how many hours did she work before semi-retiring?!?

Bill, Wednesday Sept. 18

Not a great day. Breakfast didn't sit well. Later in the morning there was a slide, or a near-slide to the floor, coming off the lift and into the chair.

BUT some good possible news on the RIO front! (That's the in-patient rehab, next stop before going home.)  More as that process moves forward.

Bill, September 17: Additional Update

Julie received mail indicating that the State of Oregon will be "conducting an unannounced on site investigation" on the rehab/nursing facility where Bill, Ayn, and Julie experienced so many problems.

Bill, Tuesday Sept 17: no tube, other

The feeding tube has finally been removed. It hasn't been used in weeks (three weeks?), but they didn't want to make a special trip to the clinic. At the moment, kind of looks like he has 3 belly buttons (the normal one, plus one at the trach site, and one at the PEG site).

The appointment was tagged onto another follow-up with nephrology (kidney) and hypertension. They are moving forward with possible genetic testing to see if a rare condition caused his high blood pressure. A diagnosis that direction changes the treatment.

Medications are being adjusted in hopes that he can stand longer without getting dizzy.

In the background: their old apartment is officially closed down and the new one is packed (PACKED) with boxes. Julie and hubby are going to the coast for three days.

Bill, September 12, Standing at the Bar

I was so excited to post a video, but I ran into multiple problems.Waited a few minutes to load, then "sorry, we encountered an error."  No, this is very important! Don't you understand, Mr. Computer? Failed three times.

Bill, Tuesday September 10: video

My great hope is everyone can view this! At the end, Bill is saying, "Controlled descent." I asked if the therapist, Ryan, told him to control it. Bill's answer is cut off, but he said "No, that's from flying." (Bill soloed a glider the day after he turned 14.)

Bill: LEFT LEG MOVEMENT!

So exciting! Ayn texted Saturday morning: "We had a great night. All of a sudden Bill got a lot of left leg movement and sensation back!"

Thursday: RIO discussion; Friday: I took a day off

On Thursday, the coordinator at Bill's facility told me that RIO is working to "take" him, but his current therapists were surprised and thought it might be a bit early. I agreed, and also explained Ayn had a bad vibe from the woman who visited, perhaps as being to much of a marketing spiel. In the end, I asked her to help put the discussion off for two weeks as The Big Apartment Move will happen in ten days and the family situation doesn't need upheaval all at the same time.

We have a moving company reserved, and the city parking permit ordered.

Friday, I took a day off. ("I" being Julie, Bill's mom.) Today isn't really an update about Bill, just peripheral activity.  I'm hoping that next week, during one of his three "standing" days, I can get a good picture or maybe even a video to post!

A day off is relative. After granddaughter "C" went off to school, I dropped some big items at electronics recycling that we were FINALLY able to get Bill to let go. On my way home, really home, my home, I got a call from the short term disability coordinator -- so a short conversation about OHSU's insistence on particular language in the release, and yes I had sent it a week ago, and yes I would also fax her a copy for her file.

Stopped to get Bill a couple more pair of gym shorts. This took two stops.

Mid-afternoon I received a call from the drug-study nurse at OHSU. I was happy to give him an update on how well Bill is doing. At the three month mark, they will do another CAT scan as part of their study; I got him to coordinate the scan with Bill's already scheduled follow-up in mid-October.

Bill, Wednesday Sept 4; bridge and sit-up

Little improvements every day! Tuesday's PT had him trying a bridge (I call it a butt lift), on your back with knees bent, lift your butt off the bed. The therapist was helping, but said he has definite strength in his hip/butt. Then she had him try a crunch, a mini sit-up, enough to lift his head and shoulders.

Ayn took a picture of Bill 'standing' today, in the harness/walker thing I haven't seen yet. Maybe we can get a better picture tomorrow?  Oh, and notice the shorter hair if you were used to his prior look!

Bill, Monday September 2: Apples and Standing

Eight weeks.

Final eating test: he got to eat apple. No problem. So no more 'soft foods' restriction. Now if he could just get some GOOD food. Bill likes the grilled cheese sandwich, I should say. And for breakfast, plain old Corn Flakes has become a staple.

But wait, you say? What's this about standing? No, he hasn't stood on his own, but they put him in a standing harness (I think it's called). I didn't get to see it myself, shucks! They expected his blood pressure to drop, and it did. So the progress continues! 

Side notes:

* The CNA who was primarily in charge during the Great Slide to the Floor is leaving. She is going to work for the facility where we had the Great Failed Transfer, our nine hour trip to Hades. I know she's not a bad person, and she felt very sorry for what happened, and I kind of wish she wasn't going there.

* Bill's neighbor, with whom a bathroom is shared, has quite the interesting toilet commentaries (we think he doesn't realize how non-soundproof the door is). "Well that's one to show the grandkids." OMG, poor kids are probably in therapy already if they've grown up with that mindset.

Bill, Saturday August 31; insurance

Hope everyone is having a good Labor Day weekend. 

I thought I was going to take an entire day off from all this, no trips to Portland, just stay home and listen to the OSU Beavers game on the radio.

But yesterday we found out that OHSU and the short-term disability insurance having been playing nice in the sandbox. It seems to be mostly the hospital's issue, in not liking how the authorization to disclose information was completed. I should have filled in the line as "OHSU" instead of "All physicians" as the ones who could disclose to insurance. Seriously, couldn't they have tracked us down, sometime in the last 30 days, to let us know they needed a revised form? And couldn't the insurance company let us know that the information had not been forthcoming before this? It come to a head this morning when Ayn didn't see the deposit made by this morning. (No, the money isn't a problem -- there are resources to move around to cover everything.) 

If you don't know me, I retired as a performance auditor. These situations make me want to gather everyone together, lock the door, and take over a white board until we fix the process. (Yes, Jodi, I know you are laughing out there. Because it's true. And it drives our husbands crazy.)

Anyway, I faxed off one form they already have. The other has to be completed by the doctor, so we probably wait until Tuesday because of the holiday.

Yes, Bill is fine, great even! Today was a shower day, but otherwise a quiet day, as will be Sunday. Don't fret if there's no post tomorrow, okay?

Bill, Friday August 30: visit from RIO; apartment coming along

RIO is the Rehabilitation Institute of Oregon, one of two inpatient rehabs at Portland hospitals. It will be the next and final step before going home. "Marcie," a rehab nurse, came to interview Bill and explain the program. She thinks he is ready to start the transfer process, so she will begin working with the insurance company, OHSU (because the doctors there still follow his care), and the current nursing rehab facility. 

Is there a downside? Yes, for Ayn. She won't be able to stay overnight with Bill as she has during this entire process. I'll grant you the fact that she wasn't sleeping in his room while he was in ICU, but she was very nearby in the waiting room. The change will be hardest on her. We're expecting his stay at RIO could be somewhere between two and four weeks, then he will continue with outpatient rehab once he is home. 

The speech therapist ran him through an assessment covering cognition and speech. The biggest issue he continues to have is some "left side neglect." When he was given a short paragraph to read (in big print), his eyes didn't move all the way to the left side of each line. When he was given a cue, by placing a pencil at the left, he could follow it down and start in the right place. He didn't have any problems with understanding and answering questions about the paragraph he had just read.

There's a little bit of an offset with depth perception, but we've seen it getting better, such as when we're having him sign his name on a line, it's closer now.

OLD/NEW apartments: the move is still set for September 16.  I know my daughter posted "right now, this week," but that was because the owner had said September 2 or as soon as possible, "time is of the essence."  The living room and master bed/bathroom are completely packed, and the kitchen is down to daily essentials. I'm going to work with granddaughter "C" late Sunday and all day Monday on her room. *sigh* she's 15, you know! She has packed several boxes already. 

Thanks to Bill's brother Ben for helping today by taking apart "the cube," a 6' x 6' IKEA structure. He also disassembled what I call the Erector Set TV/server stand. And he even vacuumed dust bunnies!

Other:

* Bill is having blood tests twice a week now, instead of daily. Today's results were excellent, no infection markers, no kidney stress markers. Sodium was a little low, so more Gatorade and/or soda for him.

* I'm pretty sure this next story does not violate HIPPA, because I don't know the patient's name. I was at the nurse's station, using the fax, when a patient wheeled up and peered in. He asked, "She's not here? I wanted to let her know I just had a solid BM after two days."

If you don't know what a BM is, think toilet. 

Life in the fast lane....   

Bill, Thursday August 29: Tri-Met Lift approved; GBB goodies

Big adventure today, with a positive outcome of getting approval for the Tri-Met Lift program. Bill (and a caretaker) will be able to use the point-to-point transit program.
\
\We got off to an interesting start. We assumed a Lift bus would be picking us up to go for the evaluation. Instead, in pulls a Broadway Cab minivan, equipped with a ramp and tie-downs for wheelchair. You know we had a little rain this morning? As the driver was pulling the wheelchair backwards up the ramp (and it was a VERY low slant), his feet slipped. Flat onto his back, pulling Bill on top of him! Ayn and I grabbed the chair to stabilize, and the driver quickly recovered. Then some finagling to get the wheelchair situated.

The ride back after the evaluation was a Lift bus. Now if they want to go somewhere, they just schedule a day in advance, cost is $2.45 one-way for two people. The only disadvantage is the pick up time is a half hour window, but hey, who's in a hurry any more?

Bill is also close to have the feeding tube pulled out. Until a few days ago, his medications had been crushed, mixed with liquid, and pushed through the tube. Then they crushed and mixed with applesauce or pudding to take by mouth. Today he took them, one at a time, as a regular pill and a sip of water. The speech therapist was monitoring closely to see they really went down.  Everything looks good.

It seems that there was a lot of paperwork today. Trying to get a form OHSU is happy with so they will release information to the short term disability folks. Paperwork for the bank to update info. Talking about doing paperwork for the new apartment.

I almost forgot. For those in the GBB family, and you know who you are, Bill loves the poster! Thanks to Justin and Nancy for passing it along with some other Terrapin goodies. I was reading one poster notation, "Your mother was a hamster and your father smelt of elderberries." Very puzzling to me, but Bill laughed and explained, "It's a Monty Python quote." Oooo-kay.

Bill, Tuesday August 27: Fifty Days

First: super happy thankful shout-out to cousin Kimberly Gomez and "The Boy" (Jacob) for helping with apartment cleaning/packing today. She took on a grungy clean-up job, saving me several hours of tackling it later. Jacob helped me load up the hide-a-bed for the dump, and later loaded the big-old desk for Goodwill.  They just moved, too. Kimmy: I can't begin to tell you, again, how much I appreciate your help.

Remember two days ago when Brooke wrote about seeing Bill's first 'real' food - it was pureed, ergo the quotes around 'real.'  Well, today Bill got real-real food. Dinner included a chicken salad sandwich, with stuff between two real pieces of bread. And some hash browns (that just seems weird, but there it was), soup, melon.  His first grab was for the milk. "Delicious," he says, in a very strong voice. Hmm, I will ask him if I can record it to put a little sound clip in the next post, okay?

They also had a visit from alpacas today. (Sorry I missed it, but that was about the time I was tipping the hide-a-bed out of the truck at the waste transfer station.)  Bill and Ayn said if they ever renew their vows, there will be alpacas and/or llamas involved.

The therapists continue to be impressed by Bill's progress, "He's a different man than we met two weeks ago."  

Part of Bill's routine includes tuning in to watch Jeopardy every evening.

Fifty days. Life is good. Give a hug to those you love. Heck, while you're at it, hug the ones you don't love!

Bill, Sunday Aug 25 -- Apartment packing; great progress

Hi there. Today you're getting an update from Brooke. I'm Bill's younger (not little) sister. My mother added me as an author on her blog. She didn't say anything about it -- I just got an email one day last week notifying me of the change. I can only assume it means that she wants me to write an occasional blog post.

I'm sure if mom were writing, she would apologize for having missed a couple of days. Apparently there are a lot of people keeping up with Bill via this blog, and of course it's concerning when there's not an update. I know I freaked out a little bit the first time my mom missed a post. So if you're like me, take a deep breath. Everything is fine, just very busy!

Bill and Ayn have decided to leave their current apartment. Since their lease is up on the first of September, *they* don't have a lot of time to pack and get out of there. In fact, they don't have any time to do it! They are very busy with rehab. So my super awesome mom is coordinating everything. If you're wondering how you can help, I'm so glad you asked: We need boxes, and hands to help pack things. Can you spare an hour sometime early this week? Let us know!

Professional movers will come to do all of the heavy lifting next weekend.

Now, on to my update about BILL himself, and his progress...

I went to see my brother yesterday (Saturday) for the first time in a couple of weeks. It was the first time I've been out to the skilled nursing facility, and the building is a bit confusing. It's not as bad as the hospital, but still...yikes! I got a little lost!

When we (my husband, daughter, and self) finally found Bill's room, we were joyed at his greeting. Bill looked right at us, waved his hand and said, "Hello Brooke." His voice was a loud whisper; clearer and stronger than what I expected, even after many descriptions from my mom. I can't tell you how much I wanted to squeal and hug him after that greeting. It's a huge improvement from two weeks ago.

I contained myself, however, and instead gave an enthusiastic wave and hello in return.

While we were there, we witnessed Bill drink from a cup entirely on his own. I know that doesn't sound like such a big thing, but I've taken it for granted. There's a lot of coordination involved in grabbing, lifting, and drinking. It was a marvelous sight to behold Bill drinking.

We also saw him eat his first "solid" foods. It was actually super-duper pureed food in a variety of bright colors and looked pretty much like baby food. (I'm not knocking it; I've made and eaten a lot of baby food in the last couple of years.) Plus, again, the fact that he's eating solids is a huge step forward!

But before lunch came, we had some time to play. Bill is really good at batting a balloon around, so we knocked it back-and-forth for awhile. My toddler loved to watch, although she lacks the skills to participate.

On the way out I chatted with my mom very briefly about Bill's next step from here, which is the inpatient rehab facility (RIO). Bill needs to be able to do about three hours of activity on his own before he will be ready to move. I don't remember precisely what my mom said -- either he's at that minimum right now, or else he's very close. This coming week is going to be hectic with packing the apartment and moving, but when it is done, I think we'll be looking pretty seriously at moving to RIO. It won't be long after that before he can go home!

In the meantime, please continue to send your kind thoughts / positive energy / prayers his direction. I promise you that Bill is funneling all of it into continued improvement.

Rock on, big brother! We love you!

Bill, Friday August 23; bike and food

BIKE: Bill was wheeled into the therapy room and up to the bicycle machine.  Ryan strapped in Bill's feet and shins, and set him off on a "ride."  A total of 15 minutes, half forward and half backward. But the REALLY INTERESTING part is the display which shows the percentage of effort coming from each side. Ryan said the effort seems to come mostly from the hip, but the left side was definitely contributing! Maybe 10-20 percent, but it's there. Ryan was suitably impressed.  On Monday, OT plans to have Bill use the "hand cycle" part of the machine.

FOOD: During speech therapy, he had some split pea soup and chocolate milk: "Delicious." And he will start getting some regular food at meals. Well, the term "regular" is relative, because solids have to be pureed, and liquids have to be nectar, or thickened.  Claire, like Ryan, was suitably impressed at his progress.

Tomorrow, Saturday, would usually be a quiet day. But he didn't get PT on Monday, so tomorrow should be a catch-up session.

Bill, Thursday August 22, mid-day

Better and better every day. Starting to get some real voice back.

Yesterday the speech therapist said it's time to order a swallow study. The test will show if he is closing his vocal cords, which confirms that it is okay to start toward real foods and eventually pull out the feeding tube from his abdomen! Closing the vocal cords is also important to make sure the airway is protected from food or liquids going the wrong way (no, no pneumonia thank you).

Bill only cares that he got to have chocolate milk yesterday, and had some baked beans today. 

Oh Tri-Met also called me yesterday about getting the evaluation done for qualifying on the Lift program. We're working to coordinate that with PT.

Today he had more e-stim on his left leg. It's been have some twitching, which while annoying is a good thing.

We have a 'care conference' in a few minutes, so more later!

Bill, Tuesday August 20 - everything fine, sorry for delayed post

I'm so sorry I haven't been able to post. I haven't been able to log on to Blogger with my phone; flash, flash, round and round. Probably should do a hard reset.

Everything has been fine. GREAT NEWS: TODAY, Tuesday, big improvement in the numbers for his kidneys.

Sunday was quiet.

Monday was rather chaotic. Our expectation for morning therapies was blown. There was just a little OT, with e-stim to the left shoulder. Bill had an off-site doctor's appointment, needing to leave before 3:00, so I was able to snag the speech therapist at 2:00 for a little bit. (She explained she's filling in for the therapy director this week, so she has meetings and paperwork two hours each morning.)

The doctor's appointment was nephrology and hypertension (nephro is kidneys). They are taking him off a couple of meds and ordering a couple of other simple changes. We hope those will reduce the stress on the kidneys.

PT today said they note continuing improvements. Bill just had a partial shave, below the jawline, in prep for e-stim on the vocal cords this afternoon. Come on, voice!