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!