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.