Tuesday, September 16, 2014

45 Hours

The morning after we learned Bill had had a stroke, I awoke around 7, as I usually do.  Tolliver was waiting for me on the porch rail, as he usually is, and I fed the animals, as I usually do.  I made coffee, I packed a bag for Bill, gathered up the chargers he would need, some clothes, a do rag, etc.  He had texted me that he was given special yellow socks (no-slip) to mark him as a fall risk on the ward.  He told me later he had set off the bed alarm trying to get to the bathroom, and the staff had run in, cheerfully informing him that he couldn’t get away with sneaking out of bed.  All over his room were large signs, rimmed in yellow, with the phrase, “Call, don’t fall!!”  

He had posted to FB that he was on a liquid diet, and this concerned me.  Remembering the reference to a neurosurgeon the night before, I wondered if this were related to a possible surgery.  (Later I realized they would not have allowed him any intake, but I wasn't at my best at this point.)
I called my mom who offered to make me breakfast before I left, and I found my way to the hospital.  Bill had texted me his room number, and when I arrived around ten, he was gone, presumably off to some test.  

I sat with the iPad for over an hour.  As our friends woke up on Friday morning, they were receiving and reading my email from the night before, and the replies, via text, email and fb were rolling in.  I answered each one, but also watched my Facebook newsfeed fill in as people posted about their Fridays.  I was happy to see all the other things going on in the world.  I was able to keep some perspective about my situation and hear joyful and humorous news from my community.  At some point the doctor came in, initially looking for Bill.  When he didn’t find him, though, he introduced himself to me.  The doctor is very good-looking, makes eye contact when he shakes your hand with a firm grip, and generally instills great confidence in his ability to provide medical care.  Except that he is decades younger than I.  

Even though I have worked with residents for all these years, I’m still surprised to find a doctor that is not yet shaving.  Oy, this was going to be an adjustment.
In the end, though, he was wonderful.  He would eventually talk to me about how the neurologist, though not yet on site, was in careful communication with the team, was checking all the scans and tests, and guiding the specific treatments.  I felt confident in the care and throughout the process was struck by the consistency of information and the team's cohesive treatment approach.

While Bill was gone, I took a call from one of his best friends.  I described the situation to him and he said he had just seen new information on this type of stroke--that people miss the signs because they are unlike what we expect from stroke.  Even primary-care docs are missing it, he said.  He told me there has been an increase in these types of stroke, and the injuries to the neck are being cause by (or triggered by, at least) things like yoga classes, chiropractic care, and the sinks in barber shops and beauty parlors.  This was consistent with the ER interviews, where they asked Bill if he were getting chiropractic care or had recently been to the barber shop.  This made me feel better--that it's a "thing," and that other people, even doctors, were missing the signs.  Perhaps I had not totally failed my husband after all; perhaps another wife might have also gone to work the day her husband had a stroke.

Bill had two MRIs while he was gone, and he came back hungry and quite tired of the MRI machine.  Almost immediately, a speech therapist came in to assess his ability to swallow, and cleared him for solid food.  This was a relief to me, as it meant the liquid diet did not indicate a concern about surgery; and she promised she would rush the information over to the dining staff so he could have a solid lunch.  She was not in time, and when his beef broth lunch appeared, he despaired--he may never eat solid food again!!  One of the NAs was in the room, saw the problem, and called down to dining to fix it.  Within a few minutes Bill had a solid-food lunch and felt greatly relieved. 

Bill was then cleared by the physical therapist who came in to assess his coordination and balance.  He was able to do all she asked, and even when she asked him to stand, she was surprised with how fast he stood.  "All my clients are 85," she said, "I'm in no hurry."  She fastened a bright pink belt around him and walked with him in the hall, holding on in case he fell.  But he didn't.  She said he wobbled slightly at one point, but was otherwise functioning well.  She cleared him completely, without the recommendation for further physical therapy.  She mentioned, though, that if he had difficulty in the future, he could get outpatient physical therapy, and she recommended a provider in town.  This improved our moods greatly, and we were both in good spirits when Bill started to have visitors.  Bill has an easy sense of humor and was happy to be the butt of jokes about the big dead spot on his brain.  He also got a printed greeting card from the hospital, which a friend had sent in electronically -- "So glad your brain didn't leak out of your head (because of all the ego stuffed in there)."  It would be fairly smooth sailing from here.

We napped in the late afternoon, and at 5:15 on a Friday afternoon, the neurologist came to see Bill face to face.  He was clearly familiar with Bill's case, reported in-depth information completely consistent with everything we had heard from the team, and explained the decision-making regarding the treatment offered and what was planned.  Again, the consistency of the information and the thoroughness of the explanations gave us great confidence in the care.

He reported that Bill's balance was likely to return in full, and he was cleared to drive.  He said he thought Bill would be able to ride his motorcycle once the blood thinners were discontinued (in about six months) but that he strongly advised against riding a motorcycle while taking the medication.  He explained the aggressive treatment of the arterial dissection--that Bill was young and should expect to recover fully with aggressive treatment.  I felt an incredible sense of relief that he would eventually be able to ride again.  We would skip the winter, obviously, but that's ok--the almanac is calling for a cold, wet winter anyway.  But he would not have to give up one of his favorite activities.

As a second wave of visitors came, I went home to take care of the animals and await my best girlfriend who had promised to visit.  It was about 8 when I got home, and I planned to clean up a bit and generally prepare for her arrival.  We had already agreed she would stay at my mom's house, but I thought it would be nice to offer the option of staying with us.  Unfortunately, I discovered I simply could not keep my eyes open.  I don't think I have ever been so tired in my life.  I called my mom who thought it ludicrous for my friend to stay anywhere else BUT her place, and I fell asleep.  In seconds.

I popped awake at midnight, when my friend was expected to arrive, and in a few minutes she was there.  We chatted a few hours and made plans for the following morning.  She went off to my mom's, and I again slept.

Saturday morning was similar to Friday.  I ate a quick breakfast with my mom, said good morning to my bestie, and headed to the hospital.  Bill had phoned me earlier to say he would be discharged that morning.  And sure enough, within a few hours, the nurse was reading the discharge instructions and going over his medication.  He had a follow-up appointment scheduled with his primary-care doc and four new meds.  From the minute we walked in to the ER door to the minute he walked out to the parking lot, was 45 hours.

I stopped at the pharmacy and had his medication filled.  They asked about the situation, and I explained Bill had had a stroke.  I told them circumstances and the presenting symptoms, and they expressed shock that they had not heard of such a presentation.  We talked about the risk factors, and the pharmacist said she had heard that some of these things increased the risk of stroke, but she assumed they were the typical presentation we think of with one-side paralysis or weakness.  I felt glad I was spreading the word about this type of stroke.  I also felt a little better, again, about missing the signs. 

Given his blood thinners, I had questions about pain relief.  The pharmacist recommended Tylenol.  I asked about maximum doses and she said no more than eight tablets a day; I took a marker and wrote "Max 8/day" on the box, and later on the bottle directly.  I didn't want to leave anything up to memory at this point.  At home I set up a dry erase board with "Tylenol Times" written on it, and we started tracking when he took them; since they were taken as needed, I feared we would forget taking a dose and end up doubling up.  So much had changed in our routine and so much new information was present, I worried we would make a mess of things.

Saturday was more resting and a few visitors, and we went out to dinner with our closest friends.  Sunday was the start of the casserole brigade and several visitors who came to cheer us up.  We felt supported and cared for.  I had originally thought we would not need anything from our friends, other than their well wishes.  When they suggested sending food, I felt guilty, like we were fine and would be ok on our own.  The truth was, though, we were exhausted.  I had become almost numbed with all the worry and relief.  I think my emotional self was simply overloaded, and new information wasn't getting in very well.  Bill, meanwhile, was feeling a new lease on life and feeling excited about living.  He chatted happily with friends and opened our fridge, encouraging everyone to drink up the beer, since he would be unable to for six months. 

By Monday I was back at work.  Bill had arranged to have friends stay with him during the day, and so we had company Sunday through Tuesday nights.  By Wednesday Bill had seen his doctor and was driving again.  Things seemed to be settling in to normal, although Bill continued to be tired. 

For several days Bill said he would have sudden, sharp pains in his head, but they were gone by about Tuesday.  For several days, he said, "My brain doesn't feel right.  I can't describe it; it's just not right."  That, too, had stopped by midweek.  Every once in a while he doesn't remember something, but it's usually something that happened during the high stress of the hospitalization. 

Things really appear to have returned to normal.  He will be on blood thinners until the spring, so there will be a Medicalert bracelet soon, along with frequent labs and concerns about green, leafy vegetables.  Everything else seems to be exactly as it was.  What a strange adventure it has been!

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