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!

Friday, September 12, 2014

The Longest Night

It was a Tuesday morning, and I was just about to leave for work, when my husband became suddenly ill.  He was nauseated, vomiting, and with a killer headache.  He said when he stood up, the room started spinning, and he vomited immediately; feeling the room swim around him, the nausea unavoidable.

I called my office to say I would not be on time.  “My husband is suddenly violently ill,” I said. “I’ll be about 20 minutes late.” My supervisor laughed at me.  “Take your time; take care of your husband.”  Later, when I logged in to our computerized system EXACTLY on time, she and I laughed together about the exchange.  My husband is grown, he can take care of himself, but he did deserve a few minutes’ TLC.

After calling work, I returned to him, lying on the bed.  His head hurt, he couldn’t keep down the Advil I gave him, and he was miserable.  We ran through the possibilities—ear infection, vertigo, migraine.  I asked him if he was afraid it was something more serious, and he said no, he was just upset about feeling so bad and knowing he needed to be at work.  We were both very wrong.

His vertigo, nausea, and headache did not relent.  That night he was able to have a little soup, as long as he didn’t move his head too much.  He fought to keep it down, along with some Advil.

When he awoke the next morning, still miserable, we called his doctor.  We made a same-day appointment.  This time I really was going to be late for work.

The doctor assessed him—his blood pressure was fine, his blood sugar was fine, he did not have the neck stiffness associated with meningitis, and although he was still dizzy, he could walk and function.  She checked his eyes, and could tell his brain was not pushing against his eye balls.  She verbalized her own thinking of the differential diagnosis, landed on virus, and sent him home.  She encouraged us to call back Friday if he wasn’t completely better.  He ate a small dinner, struggling bite by bite to keep it down.

The next morning was Thursday, and because of our schedules, I was already at work when he awoke, and right away called to tell me not only was he not feeling better, but he felt much worse.  The room was still spinning violently, nothing was helping the headache which was now unbearable, and he couldn’t keep anything down.  He called his doctor for advice.  She suggested the ER for imaging.

I left work early, although honestly, we debated the need for this.  We know, though, how long these things take, and figured the earlier we got started, the earlier we would get home.

We walked through the emergency room door of Duke Regional Hospital at 5:30 and were triaged almost immediately.  The triage nurse also went with vertigo, apologetically warned us that the wait time was nearly three hours, and sent us back to the waiting room.  Bill lay down and slept.  I read Cuckoo’s Calling by JK Rowling on my iPad. 

About three hours later we were shown a room in the ER, and at 9:01, the team came in for the assessment.  There were questions about the symptoms, we said we were there for imaging, but we were concerned about the cost.  The nurse very appropriately, with just a touch of firmness but not overbearing, said, “No, we’re going to do a CT scan.  With symptoms like this, you really need it.  In the end, it’s probably a virus, but we don’t want to take a chance.”  She strung up an IV fluid bag.  The sign on the wall said the wait for a head CT is about 90 minutes.

We could hear other patients with headache and nausea, some with vertigo, getting fluids, getting scans, feeling better, going home.  We expressed gratitude for our health insurance and resigned ourselves to the CT scan.  Nursing staff with various credentials came in to offer pain meds, some oral, some through the IV.  They started the contrast.

Bill went for the scan about 90 minutes later, came back, and at a few minutes after 11, Jill-the-nurse came in to report that Bill had had a stroke.  There was a “sizeable” infarct – or section of his brain that was dead and would never recover.  While speaking to us, she interrupted herself with, “That’s the neurosurgeon on the phone.  Let me talk to him and I’ll come right back.”


The nurse was going to speak to the neurosurgeon about my husband.  I stared at the door where she had just disappeared.  Alarm bells sounded dimly in the way-back part of my world.  There had been a stroke.  There was an infarct.  There will be a neurosurgeon.

Bill, it turns out, was feeling waves of relief.  He had a diagnosis.  They would know what they’re treating.  The pain would stop soon.  He lay his head on the pillow and chatted pleasantly with me.

I did what NO ONE should ever do.  I knew, even as I did it, that it was a mistake.  I know better.  I opened up my iPad and googled cerebral infarct.  Within seconds I had this sentence forever in my brain:  Cerebral infarctions vary in their severity with one third of the cases resulting in death.

Bill was talking pleasantly next to me.  I have no idea what he was saying, but I was sure my face betrayed my fear.  The next few minutes passed in a fog, and at some point Bill looked at me, and said, “Is this bad?”

“Honey, it’s bad.”

His demeanor didn’t really falter.  “It’s gonna be ok,” he said, and I started to re-orient myself.  The stroke had happened; the infarct was there.  My husband was not dead.  He was also not different.  He was his usual self; he could talk and joke, and was not at all diminished.  He just couldn’t walk without getting dizzy and sick.  But in fact, there were times when he could walk fine, as long as he held his head steady.  The room continued to swim in and out of focus, but I started to feel less like I was floating over a huge chasm.

At some point the nurse came in, said the doctor would be in to see us soon, that Bill would be admitted to the hospital, and I think she probably started some new medication.  She expressed her own surprise that Bill was doing so well, saying “What’s remarkable is that he has no deficits.  It’s incredible, really.” 

In this period, I started texting some of my closest friends with the news.  It was about 11:30.  I found out later, each in turn had done the same as I, had seen the “one third of the cases resulting in death” sentence, and responded tactfully. 

I went back to Nurse Jill and asked her as straightforwardly as I could, “I understand the event has happened.  He will heal from here.  He will get better, as much as the brain can, which can vary.  But he is not going to get worse.  The situation is done, and it’s all better from here.  Am I right?”

She confirmed that, yes, this was as bad as it would get, and it would, indeed, get MUCH better. 

I could breathe again. 

I started texting those friends that things were ok, and were only going to get better.

“My husband had a stroke,” kept coming in to my head.  I couldn’t stop it.  Such a daunting phrase.

The doctor came in the room.  He was amazing.  He explained to Bill that he had had a stroke, and now there was permanent cell death to a spot near the back of his head.  He explained that the stroke happened in the part of the brain that affects balance.  It was all starting to make sense.

He explained that this type of stroke is most often caused by an injury to the neck, where the artery clots while trying to heal; the clot travels into the brain and gets stuck, blocking off blood and oxygen to the neighboring cells.  He said we can never really know with things as complicated as the brain, but that he had plenty of reasons to assume Bill would make a full recovery. 

He was drawing a picture of the brain that looked an awful lot like Q-bert.  I said that out loud just as the realization hit me that he was too young to know what Q-bert was.  Sigh…

He explained that it was important to verify its cause, and not assume, in order to effectively prevent another.  We agreed totally.  He said there would be another CT scan, this time of his neck, to assess the damage to the artery.  The two large arteries in the back of the neck that feed the brain are called vertebral arteries, and damage to these arteries is called a dissection.  He was writing with a magic marker, and wrote next to Q-bert, “cerebellar stroke,” saying “This is what we know.”  Then he wrote next to his little drawing of a heart and its big arteries, “vertebral dissection,” and said, “This is what we want to confirm.” 

Some part of my brain marveled at his bedside manner.  I felt informed, comforted, respected, and hopeful.  He even said, after mulling it over for a few minutes while he spoke, “Q-bert was the one that jumped, right?” 

I started to believe it when Bill had said, “It’s going to be all right.”

A nurse came in to do a simple chest x-ray.  Although they explained why at the time, I don’t remember now, but I think because they wanted to rule out gross abnormalities of Bill’s heart, and to identify any other risks that might be slinking around in his chest and abdomen.  The nurse pointed me in the direction of glass doors so I could get enough signal to use the phone, and I called my mom.  As I dialed, I fought back a wave of tears.  The urge left me, and it never returned.  I couldn’t help feeling like we had come incredibly close to disaster, but I also felt incredibly grateful.  It had already turned out ok.   

My worries waved back over me throughout the night.  Even though I knew with my thinking self that the worst was over, I still had a visceral reaction to the dangerousness.  “… with one third of the cases resulting in death.”  I remember a moment around 2 when I had the Kindle app open in front of me, and I was staring at the last few pages of Cuckoo’s Calling.  I had a surreal feeling of being in a dream.  I was sure I would wake up any second.  I would be in my room, Eddie next to me, snoring his little dog snores, and Bill there.  I would look around the room and feel the relief that this was just a dream.  I checked in to my senses and my intuition.  Could it be a dream?  I wasn’t waking.  I knew it was real.  From now on, there would never be a day when this hadn’t happened.  I wasn’t going to wake up.

At 3:30 we were still waiting on the neck CT scan, our animals had not had dinner, and Bill said he really just wanted to nap.  He suggested I go home, and I agreed, asking him to call me when the result from the CT came back.

An observing part of my brain was surrealistically aware I was driving out of a hospital parking lot at 3:30 in the morning.  When was the last time I was even on the road at this hour?  What was I doing driving in the pitch black, in this strange car, at this end of town?  How did this happen?

I plugged in my phone and blared Spiral Rhythm, going straight to “The Faith Inside.”  I was grateful that this is my daily choice of music; the familiarity was soothing beyond the message, “There ain’t nothing in this world that faith can’t get you through.”  The surreal observer asked the atheist what, exactly, she had faith in.  The doctors?  The science?  Bill?  I shoved those thoughts aside and basked in the soothing music; I thought about the thank-you note I would write to Spiral Rhythm; I wondered again what the hell I was doing following my headlights down Duke Street in the middle of the night.

At home I rounded up the animals I could.  Tolliver was out on his nightly prowl and would not return before 6, but everyone else was there, wondering why the dinner service was so late.  I fed them with little ado, and told Eddie aloud, “Daddy won’t be home for a few days.”  He didn’t seem to appreciate the gravity of the news as he nuzzled my knee.

I stared around the house.  I tried to imagine myself going to bed and falling asleep.  Alone.  In my house.   “… with one third of the cases resulting in death.”  I wandered over to the computer.  I texted Bill to see if he was ready for me to send out an email to our friends.  He agreed, it was time.  I sat down and drafted the most incredible email of my life.  I filled in the address list to about 75 people.  I realized there were more on Facebook and messaged a few people there.  It’s an embarrassment of riches to email nearly 100 people, none of them from our jobs, when something important happens.  I again felt grateful for my Village, for living in the City of Medicine, for my husband being well.

I went to bed with Murder She Wrote on Netflix.  It’s just enough of a distraction to allow me to sleep.  I was out before the first notes of the charming and cheerful theme song played.  Bill woke me briefly to say the CT scan had come back positive—the cause was a vertebral dissection.  The mysteries were all solved, and recovery would continue.  I slept.