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!

Bill, Saturday August 17, Quiet Day

Nice to have an uneventful day.

Bill, August 16; stimulation, rash, and floor

Bill had all his therapies today. During PT/OT, they used the neurostimulators on his legs, specifically his thighs. For speech therapy, he got pudding.

He continues to have a bothersome rash from the reaction to antibiotic -- bummer. Benadryl tablets and Aveeno with oatmeal cream.

His biggest adventure today ended up with him on the floor. To get into the hair, a sling is placed under him, hooked to a lift, and up-over he goes. He's made the trip lots of times over the past, what, three weeks or so. Once he was in the chair today, he was a bit slouched. So the CNA's lifted up on the sling, but it pulled out from under him completely, and he slipped more forward.

Much help was called for, and eventually he was rehoused. But I think about 6 people are having to write up their versions of the incident. Gotta love paperwork.

Oh, he's fine, no injuries.

Bill, August 15; therapies and visiting and Tri-Met

During physical therapy today, Ryan/Derek attached neurostimulators to Bill's torso. If you have ever had PT for knees, you may have had the same treatment. Adhesive pads were attached front and back (six or eight total). An electric stimulus is administered, dialing up from 0 until Bill indicates he can feel a tingle. Then the dial is increased until he says that's enough for now, and the setting is held for 10 or 15 minutes.

The action triggers the muscles into responding, and the therapists can feel the tic or contraction of the muscle(s). After the torso, they did the same therapy on his left arm.

The speech therapist will, hopefully, use the stimulator on the neck tomorrow to help activate the vocal cords (he's still basically a whisperer).

VISITS

Someone asked yesterday about visits, and I had meant to include info on the post!

Visits right now are tricky just because his schedule hasn't settled down. Two days ago we thought everyone agreed he would have therapies in the morning, leaving the afternoon for rest, chair time, and possibly visits. Yesterday that didn't happen at all, and activity was spread all over the clock. Ayn said some friends want to bring things by -- all appreciated, truly, but we think we just need to hold off a bit longer.  Last night I wasn't able to take her to get food until 8:00.  Today she was working her way through paying mid-month bills, a task Bill normally handles, so she was just a little stressed in trying to make sure she didn't miss anything.

I'm hoping, with Bill's and Ayn's permission, to get a short video of his whispers. And those of you who are used to his long hair and beard can see the short version!

TRI-MET

Bill has an appointment next week, and the facility makes the transportation arrangements. The gal asked me what we preferred to use, although we had been told on admission that they always use Metro West. She said she didn't know if we were set up for Tri-Met or other options. Really, we could use Tri-Met's Lift program?

Egad, today she gave me Tri-Met's application forms. five pages to send in, and about seven pages describing the program and eligibility. But in my ever-so-synthesized way:
*Fill out the forms (and I faxed them back)
*Five days later they will schedule an evaluation (you don't want to know, but it is interesting shall we say)
*Twenty-days is their timeframe to make a decision.

Hmm, his daughter could be able to drive him by the time this would be set up. Or maybe his niece, who just turned two years old, if we have to go through an appeals process...

Bill, Wednesday August 14

The kidney numbers are still high, but have gone down from yesterday. The doctor here was extremely happy. They had stopped a protein supplement, and increased water, which seems to be the trick for now.  Otherwise, and I had not shared this with ya'll, they were going to have him whisked off to emergency. 

BUT he started getting a rash this morning, so two antibiotics were stopped. They are presuming it is a reaction to Sipro (isn't that the one they use for Anthrax victims?). A different anti-b (or abx I'm told) has been started, one in the penicillin family, not a problem for him. And cortisone cream for the itch.

Oh, they got him into some of his real clothes: a Grateful Dead t-shirt ("Terrapin Station") and a pair of shorts. He looks so darn normal. He had all his therapies today, and tomorrow should be the same. But the speech gal didn't give him any applesauce, so he was disappointed. There wasn't a problem, she was just a bit rushed today and worked on other things. Who knew it's work to learn to hold your breath again? 

Bill, Tuesday August 13; therapy routines

Starting a routine now.  Speech therapy in the morning.  Two or three days a week in the shower. Physical therapy and occupational therapy for an hour or two. "Chair time" for core strength and balance. So far, the therapies are in his room but we hope soon he can advance to the therapy room with more equipment and activities!

Next Monday might be a trip to a doctor's appointment: nephrology (kidneys) and hypertension.

Bill, Monday August 12

Five weeks now.

Relief, Bill's white blood count has gone down. It is still a little high, but we appreciate the trend line.  They think he has thrush! Wait, isn't that a mouth infection babies get? Yup, he's my baby. It could be related to the week-long course of two antibiotics he got, which can encourage yeast growth, even though he was given probiotics during that time.  Anyway, he is on a course of anti-b's again (three days, five? I don't remember).  The cultures will take about three days to confirm.

Much more active day, including PT, OT, and speech. 

And tomorrow and tomorrow and tomorrow...!!

Bill, Sunday August 11 (late)

We are a little worried. Sunday was a very drowsy day, but Bill did not look like it was restful. His numbers are all still good: BP within range, temperature okay, lungs clear, saturated oxygen really good, kidneys working fine. Bill's breathing, and I'm searching for the right descriptor, was labored, fast, unusual? He didn't seem to have difficulty breathing, yet he was working at it; the effort was as if he was walking uphill rapidly.

Monday will be a regular blood test, plus urinalysis and a throat swab. 

Can you help?  Sure.  Ayn is stressed, so please send relaxing vibes!

Let me answer your next question, which is, "Aren't you stressed, too?"  A bit, but if you don't know me, I'm a data person. I bury the emotional side with the overwhelming need for more information, the need to make a plan. So, hmm, yes I guess I'm a little bonkers without that information and a plan.

Bill, Sunday August 11, early

Hookah!

No, this is not a picture of Bill. It is a person getting a breathing treatment, probably Albuterol. Now picture the folks in this nursing facility, most of them double Bill's age, and a longer 12" plastic tube, getting a breathing treatment. Walking down the hall it looks like a Hookah joint.

Bill, Saturday August 10

Today I faxed the "Complaint Intake Form" to Oregon regulators (Oregon Health Care Regulation & Quality Improvement) for our July 22-23 issues at the acute care facility. I fully described the issues, but in a nutshell they were 1) medical neglect for not following the discharge orders from OHSU, 2) failure to follow standards of care (not repositioning a patient who wasn't able to move himself), and 3) failure to keep accurate records (not charting the administration of medications).

We're hoping the complaint gets somebody's attention and prevents another family from the same stress. But it is behind us.

Bill got to have a real shower finally, albeit in a shower chair and not standing.  Bill weighs about 60 pounds less than at the time of The Event ; half that weight loss was probably from water weight.

We had a bit of a worry from today's lab tests: the white blood count is up. But nothing else indicates an active infection. Temperature is fine. Lungs sound clear. A chest x-ray was clear. No pain. We were given the option to transport him to E.R. just to have an IV put in for antibiotics -- they don't put in IV's at the nursing facility -- so we opted 'no.'

I found out who some of my stalker-readers are, so hello to you all! Oh, and several people have said they tried to post comments which didn't "stick." I don't moderate comments (i.e., I don't have to approve your comments before they appear), and you don't even have to do the 'prove you're not a robot' routine. You should be able to post Anonymously at least, and several people have -- it's nice when they tag the end with their name. So Sylvia, Rhonda, Sunnye, and whomever else: we have felt your good vibes, sorry I don't know what to suggest, and maybe some geekier readers can tell us what causes comment-posting-failures.

Bill, Friday August 9, Transfer Day Good

The Great Transfer Day.

10:30 in the morning, medical transport hauled Bill out of OHSU. Now he is all set up at the skilled nursing facility for rehabilitation.

We are very glad it was an early transport. Bill's case is fairly complicated, and the doctor spent most of the afternoon and into the evening going through his history, getting the prescription orders in, and talking with us.  Seriously, she was still on site when I left at 7:30.

The staff have been great. They even wheeled in an extra bed so Ayn can stay with him. We were thinking she might have to revert to the ICU days of sleeping on the waiting room floor, or maybe on a cot or mat. But the efforts at the facility prove they understand the patient will have better outcomes with an involved family.

We could also sense the professionalism of all the staff, and they all reported longevity with the company. (Unlike our prior deal with the Great FAILED Transfer Day. Enough said. Oh, except I am filling out the complaint form to send to Oregon regulators.)

So Saturday should be off and running with lots of movement, speech, and games.

Bill, Thursday August 8

Today is one month.

Tomorrow Bill moves to a skilled nursing facility for the next step in rehab. The rehab at the new location could be short as a week or two before he would move to the final step:  inpatient rehab iIn preparation for going home!

A quick note in case you have tried to communicate with one of us but we have not responded. Even my own husband doesn't quite understand how busy each day is and why I have not been in touch with him as often as he thinks should be possible! (I love you, honey)

These cell phone and WiFi connections have also been less than we're used to in our own homes. But let me give a little plug here that my Verizon connection has been much better than their AT&T iphones!

Bill, Wednesday August 7; trach out

Trach Is out; the only line attached to him now is a just-in-case IV.

Posting a picture of his latest writing which reads "love you!" with a four-eyed smiley face

(Ayn points out he had his glasses on at the time)

Bill, Tuesday August 6

Good news: the trach was 'capped' today, and will probably be removed tomorrow.

Bad news: tomorrow's transfer to a rehab facility is not going to happen.

The rehab in North Portland looked at his file, and said with the number of acute clients they have currently, they can't take Bill's case right now. Their in-house doc would have taken him, so that was good news.

So lots of phone calls again this afternoon.  Have I mentioned it's a good thing I'm retired? But Bill's 'nurse-sister' Dianne is helping out with contacts in addition to working her full-time-plus job. Options 1 and 2: She is pursing two options, one near her work, and another to get a doctor to follow him at the previous facility that couldn't take him. Options 3 and 4: The North Portland facility that can't take him is talking with two related SNF's (Skilled Nursing Facility) in East Portland. Option 5 (fail): They gave me the name of another in southwest, but it doesn't have a contract with his insurance. Option 6 (fail): today's OT dropped a name, but it's another facility which doesn't have an in-house doctor (from their website: "...Directed by your physician, our team..."

I also have two outstanding messages to the hospital's 'rehab navigator' but I'm wondering if she's on vacation without any backup coverage.

Let me end with other good news, in addition to the trach-moving-to-removal.  Bill had speech. physical, and occupational therapies today. He's really trying to talk a lot. When PT was helping him back to bed, he was trying to tell them something. I leaned in and gradually picked up "bed ow" and "scratch" -- each time taking three attempts before I could understand -- and finally pointing and saying "back." They had laid him down on the bed controller (under a shoulder).  Yes, ow!

Although today was not the move forward we had hoped, there was still progress.

One Day At A Time.

Bill, Monday August 5

Today is Bill and Ayn's anniversary.  Bill drew a (sort of) heart for her.  And he has been saying, "I love you," first thing in the morning.

A one-way valve was put on the trach: air can pass in through it, but exhale goes completely up and out.  If that looks good after 24-48 hours, they can put a cap on it, and then possibly remove the trach completely in another 24-48 hours.

Bill is doing a lot of talking, whispering, almost too much. He tries really long complicated sentences. We have to back up, "Say one or two words at a time," and to over-enunciate because the mouth muscles are out of  shape! He was trying to say, it turned out, "I want to make sure she gets albuturol," referring to Ayn needing a refill (which was taken care of several weeks ago).

He is definitely enjoying ice chips. Yesterday he wrote, "So thirsty."

Wednesday might be the transfer day to skilled nursing.

Bill, Sunday August 4; swallowing; a trip outdoors

"I like the purple juice," Bill whispered.  She had only asked him to say, "Hello!"

The speech pathologist was working with him. One routine is chewing and swallowing ice chips (frozen grape juice, so they can see if it comes through the trach instead of going down the throat.) She also spoons a little bit of juice to test how well he's swallowing.

At Bill's request, we also made a trip to the great outdoors. Down one floor and out on the patio near the tram. Very comfortable temperature, a quiet day here, and a great view. Um, why did the doors lock behind us? Luckily there's a lot of foot traffic, so we didn't have any trouble getting back inside the hospital.

Bill, Saturday August 3

Bill had two sessions sitting up in the chair, and his neck strength seems to be fully back to normal.

Occupational therapy (OT) said she thought there was more tone in his left arm (the weak side).

When his sister visited, he was able to whisper "Bye, Brooke" when she left. Later he was able to do the same for his grandma. Oh, and Brooke read a Dr. Seuss book to him, "Did I Ever Tell You How Lucky You Are?"

I toured another skilled nursing facility. ("I" = Julie, Bill's mom.)  It seemed much better than the site which fell through yesterday. Even though it's part of the same parent company, today's site had more active patients: moving around in, talking with other patients or with me. And the nurse, Loni, said even though they have visiting hours, family isn't really kicked out. The nursing director, Brenda, has been there over three years, and with the company much longer (it was either 8 or 18 years).

When I returned to the hospital, Ayn said OT was advocating for a direct discharge to inpatient rehabilitation, skipping skilled nursing completely. So I left a voice mail for the Kerri, the hospital's rehab navigator -- but I assume she's off for the weekend -- asking to get RIO here for an evaluation.

Tomorrow being Sunday, we don't expect much to happen.

But we'll just keep blogging along.

"Blogging along the open road,
Blogging along under a sky that's clear, 
Blogging along the open road,
All in the fall -- oh wait, it's summer - in the summer of the year...."  Just a little rummy here, folks.

Bill, Friday August 2; no doc at rehab facility

Well, no transfer today. Short version: no doctor on site for the location we thought Bill was headed -- so he would have to 'bring his own' to follow him, track orders, etc. And we have no way to make that happen.  Trust me, we made a TON of calls today.

So lots of time sitting in 'the chair' today, and occupational therapy (OT) worked with him. We're still hoping to see physical therapy and speech therapy, but it's getting a bit late : (

On the good side, OT talked with a social worker (Kerri) who, believe it or not, was very helpful.  The title on her card is "Rehabilitation Navigator." She asked if anybody had talked with us about skilled nursing facilities versus inpatient rehabilitation. Nope.

As Kerri explained, inpatient rehab sounds like a step backwards; it is, in fact, at a hospital. I will refer to inpatient as RIO, the Rehabilitation Institute of Oregon (at Good Sam hospital). At skilled nursing, he will get daily PT, OT, and speech.

At RIO, he has to be able to handle a minimum of 3 hours of therapy, though not necessarily all in one block. But it's get up in the morning, daily hygiene and getting dressed, practicing 'household' and work movements, strength/flexibility, speech. They will begin the process of determining what he will need at home, set up a mock home (measured to their real apartment), and work towards whatever his special equipment needs might be.

Bill might go to a nursing facility for as little as a week. Wow. We were prepared for two months.  It still could be a long period. Now we have a much better vision of the upcoming steps, with HOME at the end.

Ayn reports Bill has vocalized, "I love you." And he was saying something about "funny." "Tell me what happened with Squiggy and Granimal."

Oh, and the nurse taught Ayn how to flush the feeding line after a round of food has finished.  Eventually that line can come out. Our understanding is it will be in place another four weeks.

Bill, Thursday August 1, mid-day; smaller trach

So much has happened this morning.

Doctor Sharif and Doctor Kory both talked about discharging, possibly tomorrow.  In our world, discharge means transfer to the rehab facility, although Dr. Sharif said "home." He also talked about a couple of follow-up appointments in August. We'll see if that's possible.

Do you remember that Bill was signed up for a drug study within 24 hours of coming here originally? Then it was stopped because of the stress on his kidneys. It turns out they will still follow-up with him, it still gives them data even if his course was outside the design.

Speech pathology worked with him on swallowing and some very limited vocalizations. Later, the ENT doc came and switched out his trach to a smaller, cuffless one. The switch means that air moves through both his mouth and his neck; the trach can be blocked so when he exhales, the air passes his vocal cords and he can start practicing speech. Eventually the trach can be removed.