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.