Author: alohawild

Sleeping in the spare bedroom, I did not hear my alarm and was up at 7:30ish, making the morning a bit more hectic. The floor in the bathroom connected to the master bedroom was torn open and the smell of mold was strong.

I had to rush, and it was a long blog. I was a few minutes late when I reached the hospital. The docs did connect with me, and I was right in my understanding of the MRI write-up in MyChart for Susie. Susie had three minor strokes on Sunday. Susie is recovering fast from most of the impacts of these strokes.

Susie was eating better and looked more alert than the days before. Her nurse was Barb today; nurse Barb was previously assigned to Susie. Barb thought Susie was harder to understand but looked much better now.

I missed helping Susie with breakfast, and lunch was late. I had only toast for breakfast, so at half past noon, I stepped out for lunch at the Red Onion and ordered mildly spiced Tom Yum soup.

When I returned, nursing aide Alex was feeding Susie. I took over and helped her finish about 1/2 supplied lunch. The mac and cheese was paste and impossible to eat (we sent word to the kitchen). Susie was eating better, and we had no choking from the food or any drinks. A much better improvement.

The speech person came in and got us another Jello, and she watched as Susie ate that and drank iced tea. Thusly, Susie got ate two Jellos for lunch (and one for breakfast, she let me know). The speech gal thought Susie had improved, but not yet enough to advance to chopped food.

I put on Elton John and later Billy Joel for Susie. She chatted, it is difficult to understand her, with docs and nurses today. Susie seems to know she needs to improve.

The day continued to be blessedly boring with Susie napping and I even falling asleep once. Often Susie would ask for a drink–it comes out as a demand, but words like “please” and “would you be so kind” are not working for her. To do this, first, Susie has to have her head raised to drink. This feat is done by pushing a green button to unlock the bed and then raising the head using the 45-degree button or the head raising button. There is some iconography near the buttons that sort of help. But, the trick is to know that you must press the seemingly meaningless green button first. You then carefully pass the iced tea containing cup, no lid, to her. She then takes a tiny sip. You take the cup back. She looks forward, lowers her chin, swallows, and again swallows. Often she gets distracted, and you remind her, “swallow.” This may repeat, and an intelligent person asks again if she wants more; otherwise, you end up repeating the whole process. Lastly, pressing the green button first, you lower her head to 19-degrees. The process will stop at convenient regresses like 45 and 30, thus one must push the head-down button until Susie is happy.

Aside: Details provided for anyone that might help.

I did the drinking process about every twenty minutes at one point.

The nurses did not have Susie’s dinner tray until after 6ish, other challenges on the floor keeping Barb busy. So I helped with the first enjoyment of pureed turkey and a shake made of ice cream and Ensure supplement drink. The shift change is at 7PM, so it was a bit crazy, but I kept helping Susie eat. I would do the spoon control for the shake, but the turkey was put on her spoon with the extender to help her hold it, and she fed herself. It is sticky while the ice cream-like stuff would well fly. We also had new iced tea I brewed and poured over ice (Susie and her family like only freshly made unsweated iced tea). We managed to get through about 1/4 of the food.

I headed out after 6:30 with Susie planning a second round with the nursing staff in twenty minutes.

Nursing Homes: Our first three local choices did not take Susie for various reasons. We are now applying to homes in Newburg, Portland, and other not-as-close-as-you-would-wish but highly rated places.

My drive back in Air Volvo in the dark was without incident. I stopped by Olive Garden and waited for a to-go order of soup, salad, and breadsticks. Remember, I have a colonoscopy on Friday. Time for soup!

I watched the second half of the latest Doctor Who episode while I ate. I still like it. There was some very light comedy at one point that made me laugh pretty hard. However, on my first time seeing this gag, it was not that funny as it was a bit of a shock to have a joke in a quest to save the universe.

Reading in bed in the spare bedroom, I finished Mexican Gothic, a new book I was reading, which kept me up a bit late. This is a horror-sci-fi novel translated into English. I found it a bit plain for a horror story, and the characters were not that interesting. This translator made a few English errors here and there and used very strange words a few times. However, it slowly builds, and the last twenty pages were exciting, and I could not put it down. I cannot recommend it, but if you can get through the first half, it improves and then is impossible to put down.

I slept after that and managed to wake for my iPhone alarm with the iPhone under my pillow.

I slept in the spare bedroom as the master bedroom bathroom demolition is today. The toilet leaked, flooding the room slowly while we were out in New York City. Jeff and I agreed it was time to do more than a repair. A newly tiled bathroom with a modern high toilet, a shower with built-in handles, and a seat seemed the correct answer.

This is Monday, and so, remembering my password after a week, I logged into the shoe company laptop and started following the complex rituals of unexpected absence and requesting medical leave. Nike uses an independent company, Sedgwick, to evaluate and grant leave requests. I have been done these requests before. My experience is that it is slow but professional.

I also wrote emails to folks I work with and some friends at work to let them know what is happening and that I, for the moment, am out for two weeks but will likely be out longer. I received kind and very supportive replies from Nike.

This cost me the morning. I also had won a mail auction for some very old stamps, and they had been at the post office waiting for a signature for more than a week. So off to our postal center. It is a rather strange place as there is one access door and it does no retail business. This means you have to use the self-service machine or find an actual post office for anything more complex.

I was there a few minutes before the open on a Monday in Air Volvo. I had to park in a different parking lot and walk over. A poor sign for a quick visit.

I helped form the line outside as more and more folks appeared and were surprised to enter a long queue. Finally, the service door opened in the lobby, and a clearly nervous gal made the first request. It took the postal folks fifteen minutes to find the upset gal’s mail, and the gal was still unhappy and waited for possible more mail while the line started again.

The next person left mad as she discovered they did not do stamps and such. The next person explained that she forgot to label her box or her return address. The incredulous postal employee just told her it was gone. All packages like that are sent to a central place, opened, and returned if there is any way to identify the shipper or recipient. This explanation in no way pleased the gal with the label. She just wanted them to get her box and give it back to her. Not believing she had lost the box, she said she would use the Internet to find the solution and left with her label. My turn came; I just handed over the signed receipt, and they gave me my letter. A few minutes later, I saw the guy who was just behind me in the postal line in the parking lot with a huge oversized box, and we congratulated each other for surviving the postal quest and attaining our boons.

I was now late, and my stomach was unhappy. So McDonald’s sausage sandwich with a coffee plus hash brown was my solution.

Finally, Air Volvo and I arrived in Portland twenty minutes late. I was happy to see Susie at 10:30. I had just missed the docs, but nothing interesting was going on. We had a new nurse, Mark. The OT and PT folks showed up, and the nurse assistant let me know Susie had some breakfast. Mark, our nurse, let me know that Susie could swallow pills. Susie, while still very hard to understand, was talking more and drinking iced tea.

OT and PT said that Susie worked very hard and was very interested in getting moving. She was not able to hold her weight on the left side.

I tried to write the blog while OT and PT worked with Susie. The room is tiny. I am always in the wrong place and distract the folks from things, so I sit out in the waiting area or the chapel.

I started the blog and tried to write it describing the events of Sunday. I finally got it out just around lunchtime here.

The palliative doctor came to talk to us. As I would expect, she spoke softly and calmly about a tough set of topics. We talked about our goals and agreed with the doc that if we cannot reach them, we would begin palliative care and expect that to bring a close to Susie’s story. Susie, while having difficulty speaking, appeared to understand the discussion and goals. The doc explains that palliative care focuses on the symptoms of illness and not on cure and is often used when a treatment is not possible. It was a sobering discussion, and the palliative doc is now part of our care team, but she plans to just follow along for now.

I called in Susie’s lunch order with Matt’s help. Susie’s lunch arrived, and I encouraged Susie to eat, and she managed to handle, to some degree, the spoon and eat about 1/3 of the mac and cheese. I feed her jello as it is well jello and needs to be kept steady; otherwise, it will wiggle away. Susie quickly chokes on liquids, but this seemed to improve over the day. The strength of her swallow improved all day.

We watched A Christmas Story movie between interruptions, it being a hospital. Yes, the story of Ralphie and his quest for an airgun for Christmas. A Quaker clergy stopped by and prayed with us. Susie took a nap after the movie.

I stepped out for lunch and took a walk around the Legacy medical campus. I needed to move a bit. I found a funky place for lunch, Anna Bannanas NW, and had a strange tuna fish sandwich. It was open-faced with capers and various veggies and tiny pits of white tuna from a can. All of this under a melted swiss cheese slice. It tasted great.

I should have known to go vegan at Anna Bannanas NW when the guy at the counter suggests a veggie sandwich. He also told me he sold a lot of tuna fish, but he did not eat meat. It took him ten minutes to make my tuna fish sandwich–I am the only customer at 3PM. He also informed me that they had no silverware left, so I had to use plastic. Unfortunately, the plastic was so weak it just sort of bent when you tried to use it. It was a very funky experience, but the iced tea, caffeine-free, was good, as was their Internet connection.

I found Susie asleep when I got back. Dinner came while she rested, but Susie was tired and was not ready for it.

I left at 6:30 and drove home in the darkness and deepening flog. The nursing staff would handle a later dinner for Susie.

I reached home without issue. I decided to get something from Olive Garden and took Air Volvo back to downtown Beaverton. The fog back was quick thick when I reached our area; I could not see anything beyond fifty feet, even brake lights. The mist is always deep here and the last to burn off.

I ate dinner while trying to watch the latest Doctor Who episode. It is a complex story, and I like what they are doing; it is so old-school Doctor Who. Universe threatening events with the Doctor in the center of the events and the companions working independently of the Doctor. The dialoguing bad guys explain the evil they are planning, all from the 1960s and 1970s style of Doctor Who. So far, the critics do not like it, and the new fans are confused. Each episode is the next part of a story and must be watched in the correct order. I am pleased to try this out.

I managed only half of the episode as I was tired, and I did watch it on Sunday, with too many commercials, so I can stop and catch the other half later.

I managed to sleep, waking a few times, but I fell right back to sleep.

I am sorry for being late today with this blog. It has been a busy morning, and I am just getting to this in the late morning on Monday.

Sunday morning started with me getting going at about 7ish and doing the usual things. Barb and Leta were flying back to Michigan that afternoon, so they stopped by to say goodbye to Susie in the early morning. I would follow later in the morning with my usual 10AM time.

I wrote the blog, had breakfast, and showered, and got dressed. My phone rang with the hospital name on for caller ID. It was Susie’s support people. Susie was in some distress as her heart was beating irregularly, and they saw signs of stroke and had a stroke code called. Susie was rushed to a CT scan and lay flat on her bed. Her ability to talk, swallow, and move her right side was impaired.

Leta and Barb were there for that, and I talked to them a few times as I drove in early. They left just before I got there and I would text and call them with updates.

I spoke to the docs, and all of us were concerned with the changes and what options were available to us.

Susie’s heart responded to new meds. There were no new stroke signs anymore. Susie’s swallowing ability improved, and I fed her crushed-up meds in apple sauce while the speech gal watched and evaluated Susie.

I stepped out to get lunch at a Mexican place. It was a short break, and I needed to refocus on the good news that Susie was recovering from the morning event. I went to a place called Santa Fe. The order taker (this is a pick-up your food place) did not speak English, so my attempt to ask for whatever the order taker liked failed. We managed to agree, somehow, that I wanted a burrito with steak. It was OK–should have stuck to tacos.

Susie napped, as much as one can in a hospital, and seemed back to herself a day ago. By 6PM, I felt safe to leave. I was emotionally drained by then.

Air Volvo and I managed the dark rainy travel that is the deep fall weather here. Corwin was home, so we headed to Wild Buffalo Wings. I had wings and a Coor’s Light (a refreshing beer-like product).

And then…I emptied the master bedroom bathroom of stuff. How could there be so much stuff in one tiny bathroom? I managed to get it cleared after filling a plastic tub and a trash bag. How we could have calcium supplements never open that expired four years ago is a mystery I choose not to focus on!

Jeff will start remodeling and repairing the bathroom on Monday, so I had to clear out the basic cabinets and so on.

I also get to sleep in the spare bedroom as it may get messy in the master bedroom. So I practiced that on Sunday night. It was comfortable after I moved the reading light from the master bedroom to the spare.

All my toiletries are in the shared bathroom now. I managed to sleep about 11ish.

 

The night was difficult for me as my asthma was out of control. I was wheezing; I could hear the banshees screaming in my chest. Around 4ish, the Benadryl and inhalers finally worked to stop the post navel drip and the unlocked lungs. I slept into 9:30ish, and that helped with the Benadryl hangover. Likely this mess was caused by exhaustion brought on by the booster shot and stress. “What does not kill you makes you stronger” should be the motto for the Moderna Booster.

I managed to pick up my Rx at RiteAid after all the excitement of being filled in New York City and rejected to refill it here in Oregon. I did not manage the laundry as I was slow this Saturday morning.

I spent a bit of time in Air Volvo going across Beaverton and exited 26 at Providence Park instead of using the tunnel as the traffic was too messy. I was surprised that the noon traffic was heavy, but it was Thanksgiving weekend.

I relieved Barb and Leta (the new nurse, Jenn, put up with two people not quite following the rules), who went off to find lunch again in Beaverton and pack. They leave on Sunday morning, and I will not see them on Sunday.

Susie was more animated and alert on Saturday. She seems very relieved to see me. I have been doing this daily visit for more than a month now. Some days are short visits, but I am there every day.

We spoke to the doc, the doc asked to have a meeting and reviewed the future care options for Susie. The doc said we have to ensure that care has a goal, and we agreed to have Susie thoroughly cared for, but resuscitation was no longer a good option due to the multiple strokes. Resuscitation will just cause more strokes or worse. It was a sobering discussion but a good one. Our current goal is to get Susie back to her near pre-stroke self.

Barb was feeding Susie when I came in, and I continued until Susie was a bit worn-out and had finished half of her lunch. We do not want a feeding tube for Susie, and so she must eat. So Susie slept for a few hours finding a few hours without pills, blood draws, tray delivery for dinner, and all the things that happen at hospitals that prevent you from getting any rest.

Barb and Leta returned to the room after 5ish. Jenn was polite but pointed out that three were too many people in the room. I always hate leaving, but you need to get rest and a break.

This is my last dinner with Barb and Leta for this visit, and we decided to try out a place in Portland. Barb picked Elephant’s Deli on 22nd. They were open for another hour, and there was parking! I had a pop pie. Barb a grilled cheese. Leta tried the soup. It was a bit of a sad dinner, although the busy place as this was our last dinner today, and we all missed having Susie with us. We said our goodbyes.

I returned home enjoying the extra dark and wet that is driving in the Pacific Northwest in winter.

I have arranged that Ann Weld-Martin will visit Susie in my place on Thursday, and Wayne Weld-Martin will drive me to and fro for my colonoscopy on Friday. So I have to do the prep (yuck) on Thursday for a morning peek-a-boo on Friday. So Thursday will be the first day I will miss seeing Susie since all this started in New York City.

It was quiet at the Volvo Cave, and I decided not to read and rest but went to the new Ghostbusters movie. Yes, they made another. This one harkens back to the original two films and manages a successful tap-dance of mixing horror and comedy. It also respects the material and manages to tie the movies past movies to this movie well. It is primarily a high school and younger flick, but I laughed and was startled a few times. So cool! I even liked how it dragged a bit like the first film. And a 12-year old kid using a proton pack and a 15-year-old illegally driving the Ecto-1 was just fun. So not terrible, not great, but fun–precisely like the first movie.

I managed to sleep without issue after finally falling asleep near 1ish.

My sleep was difficult, and I was up getting some Tylenol to stop the pain from the booster shot in my right arm. Thus, morning came sooner than wished, and I was moving about around 7:30.

I had breakfast, including some turkey, and did my usual email reading and updating myself on the news. Omincron, the new variant of Covid-19, has been announced. The markets around the world fell. We may be facing an escape from the vaccine and something even more contagious than Delta. It upset everyone.

I did the morning shift and headed out a bit late but made it to Portland just after 10AM. Susie was awake and feeling better. She cannot find the words she wants to use, but her speech is improved, much more animated.

I cleaned and repainted Susie’s fingernails, bright pink. I had brought my nail kit with me, and with Susie feeling better, I thought it an excellent time to use it. Everyone was happy to see her new paint.

I spoke to the doctors, and they explained that Susie would have good and bad days from the severe illness (lung collapse on the left side). She did not have another stroke, and that they needed her to eat better. The nurse is suggesting a feeding tube as Susie is still having trouble with choking. Susie did not like that idea and was more motivated to eat with care.

The nurse allowed Susie to have to support people at a time, Barb and Leta. They had lunch and then got there about 1ish. I headed out for a late lunch.

I circle Air Volvo in the Pearl District; it being Black Friday, I ended up having to use a parking garage instead of a straightforward parking space on the street. Next, I headed to Deschutes Brewery. There was seating in the bar, but all of those seats were too close for my tastes, and I found a seat in a corner by myself.

A gal in a Christmas sweater got me a porter and a tray of finger foods. I then went online and launched fruitcakes and fudge from Gethsemani Farms. Every Black Friday, I re-order last year’s gifts of fruitcakes and fudge for the holidays. It is my first purchase of gifts in the holiday season and is how I started the holidays. “The Fudge and Fruitcakes must flow!” I

I had coffee and a dessert as the porter hit me pretty hard. It was nice to hang out in the bar again.

I went home and took a nap. Barb and Leta then met me at the Beergarden in Beaverton for dinner. I had nodded off and missed Barb’s text, so I arrived after them y a few minutes. It was agreed that I would sleep in, and Barb and Leta would take the morning shift at the hospital.

We all agreed that Susie was better.