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Saturday, February 07, 2004

The fateful day

People have asked me to provide a summary of Linda's stroke, so I am going back to my handwritten notes to fill in the beginning for those just learning about it. The short and quick of it is that Linda had a stroke and we've spent many months recovering from it. Here's how it began, from my perspective:

I woke up around 7am to find Linda sitting bolt upright in bed and breathing very quickly. I thought she had just had a nightmare, so I said, "What's wrong?" She replied that she was dizzy, and nauseous, and her left side was weak and asleep, and her tongue was numb and it was difficult to speak. She thought it was a migraine because the symptoms came on when she "cracked" her neck stretching as she sat up.

She laid down for about 20 minutes while we talked about it. Finally, since she had to use the bathroom, she sat up and promptly began to vomit on the floor. After her sick spell, I helped her walk to the bathroom. She walked like Henry in Regarding Henry. That is, she stepped forward with her right foot but kind of pushed her left foot forward.

When she couldn't get out of the bathroom, I picked her up in my arms and carried her to the livingroom couch. After a minute or two I called an ambulance. I decided there was no way I would be able to dress her, dress Ellie, carry her to the car, and go. There was snow in the driveway and a good chance of getting stuck.

It was about fifteen minutes for the ambulance to arrive. I explained Linda's symptoms, and, not liking the sound of the "neck part," they decided it best to stabilize her neck with a collar. She was strapped to a rigid board and lifted onto a gurney.

Ellie woke up and walked into the livingroom just as Linda was being lifted. She was quite upset to see her mom being wheeled out into the ambulance. So I asked her, "Do you want to visit Mom at the hospital?" She did, so I said, "Then we had better change your wed diaper. It is soaked and you are getting me all wet!"

She was very compliant for her diaper change and getting dressed. I told her that I needed to get dressed too, which I did. Then I said, "Don't you think we should get some clothes for Mom?" She didn't really want to, so I made a game of it. I would ask Ellie where Mom's shirts were, and we would find them. Then socks and underwear, etc., until we had everything.

We packed up a little suitcase and headed to the hospital. When we arrived, Linda was about to go for a CAT scan. Ellie and I waited in the lobby and did the paperwork with the nurse.

I met the doctor, Dr. F, who asked me about Linda's symptoms. He also asked me about medications Linda was taking.

This was the first mistake. I said she wasn't taking any. She was--birth control pills. I forgot to say, and the doc was mistaken by not asking about them specifically.

We were in the waiting room a long time. There is a great magnet toy there with rubber frogs and lizards in it. You move them around by sliding magnets under the table. We played, making the frogs kiss each other and running them through a tunnel in the center.

After the CAT scan had been read, Dr. F explained that it showed no bleeding. He made an omission that was so significant as to be a deception. While he said specifically that there was no bleeding, he very specifically omitted that CAT scans do not show blood clots. I sort of knew this in the back of my mind, but again I didn't ask.

Dr. F wanted to check for meningitis, which requires a spinal puncture. The risks are similar to the epidural Linda received when Ellie was born. We did the check, and it took quite a while because of Linda's scoliosis. When it was finished, it looked good, so that was pretty much ruled out.

At this point, the Dr. said he wanted Linda admitted for observation and that he would be more comfortable if she transferred to Boone Hospital Center where they had outpatient neurology. I talked with Linda who still believed it was a migraine that would be over before she even arrived.

I didn't like the look of her, particularly the way her eyes did not track, so I told the doc to have her sent.

I took Ellie home and called Mary who said she could come in and watch her. I called Karen S., who said "Who can I call?" I told her, "Call Jen C., she'll call everyone."

When Mary arrived, I tried to show her where things were, and then I headed out. I was a bit sleepy on the drive, so I listened to opera on the radio. It wasn't in English, but it was enough to keep me awake.

The hospital is easy to find, and there are signs that lead you right to the main entrance. I parked and went in the main entrance. At the front desk, when I asked, Linda was not yet in the computer, but they had her room number for me--4104. She had just arrived.

As I waited at the main elevator, I heard a page over the hospital paging system for "MRI 4100 STAT." I thought to myself that that was for Linda. I was figuring that the doctor wouldn't have liked Linda's symptoms and would have called for the test just to be sure. I wasn't really worried, and I knew it meant that I was right behind Linda's arrival.

When I found 4104, Linda was there, and so was her neurologist, a young woman named Dr. G. Linda was sleepier and less responsive than when I had seen her in Kirksville.

The doctor pulled me aside and started asking me about Linda's condition, when it started, and so on. I was immediately impressed by her intense focus. She was taking notes and looking at me, and I felt like she was measuring every facial expression.

She asked me again about medications, and this time I remembered the birth control pills. She replied in a grave tone, "I did not know that. They did not tell me that." I explained that I had forgotten to say in Kirksville, and no one had asked.

Somewhere here I should mention that Dr. G. seemed angry. I had this feeling that she was angry with me, but I later realized that she was merely surprised by the situation. She had expected to receive a migraine patient and someone in critical condition showed up. She was angry, but not with me.

After getting my report, Dr. G. explained that she believed Linda to have had a stroke in her lower brain stem. She went on to describe that this part of the brain controls movement, coordination, speaking, breathing. "This is bad. Very bad. This may take her life."

I went to the neuroscience intensive care unit (NSICU) to wait for Linda to arrive back from her tests. After a few minutes (maybe longer) a woman came to tell me it would be a while and that I could wait with Linda.

We wound our way around downstairs to the MRI room. Someone else was already getting a test, and we had to wait. Linda could still speak when I found her. The first thing she asked was, "How's Ellie?" I told her that Ellie was with Mary and had gone to a basketball game with her. I believe Linda cried--we had been planning to surprise Ellie on Saturday by taking her to the game. I was glad that Mary took her, but I felt disappointed and left out. I think Linda did too.

I asked Linda if there was anything else I should tell the doctor. This was about 5pm. Linda could speak, but it was difficult and slow. I think many would have found it difficult to understand her. She complained of a localized headache above her left eye. She also said that her right side was tingling as her left had earlier in the day. (She still had strength to squeeze my hand yet.)

I asked her if she had had symptoms earlier in the week that might be important. She said that she had had trouble speaking. I asked her if she meant that her thoughts got ahead of her mouth, or if she had had trouble forming words. She said, "Both."

The last thing she told me was that her cold was bothering her. She was having drainage in her throat and trouble swallowing it.

At about 6:30pm, Dr. G. told me she had found a clot in Linda's brain stem, as feared. She reiterated how bad this was. I mentioned the symptoms Linda had mentioned, but the doc didn't say much about them. She already knew how bad this was going to get I think.

While I was waiting, I called Karen S. I don't remember if it was before or after I learned of the clot. Karen said something devastating, "Is there anything I can do to help?" That made me cry pretty hard.

The hardest thought of the evening was, "What am I going to tell Ellie?" I had to just not think about that.

I went back up to NSICU with Linda, and seeing her situated, I called a cab to go to Wayne P and Katheryn B's house. I didn't know how to get there, and a cab seemed the easiest way to go.

The cab ride was something of an adventure. They always are I think. I've noticed that often cabbies seem to be people you would be afraid of in any other context. My cabbie was friendly enough although he didn't actually have any of his front teeth. He kept the car swelteringly hot, and the vents smelled of burned oil. We chatted about the car some, which was a big Mercury (much like a Ford Crown Victoria), and remarked that the valve cover gasket probably leaked.

When I arrived at Wayne and Katheryn's, they were watching a bit of TV. They showed me my room and we muted the TV and chatted about everything that had happened during the day.

This was when I realized that I couldn't eat. I had been starving all evening, so when they asked if I needed anything, I asked for food. Wayne brought me a huge plate of Chinese food which I sort of played with, forcing myself to take small bites. Eventually the dogs took advantage of a lapse in attention and gobbled down the contents of my plate.

At about 10pm, we got a call from the hospital. They said that Linda was becoming less responsive and might not be able to communicate much longer. We decided that I should go back--when they call to give you such an opportunity, they probably think you should take it.

As soon as I walked in the hospital, I was hungry again. I headed to NSICU and they let me in. Dr. G. was there and had already examined Linda. I talked to her a few minutes, and she confirmed that the stroke had "completed" to both sides of Linda's brain. Very bad. She left shortly after.

Days later, Katheryn remarked that she had seen a very distraught woman leave the ICU that night. We realized that it must have been Dr. G. That clued us into the understanding that Dr. G. was professional in her presentation but very personally affected by our case.

Over the first night, the rule was to wake Linda every hour. I asked the nurses to get me before hand so I would be there when she was awake. It would effectively appear that I was there all of the time. But in between, I stayed outside where I would not be a bother or in the way.

Outside, Katheryn and I talked. We didn't necessarily talk about things of great import. I told her how Linda and I met; about our first date 15 years ago. I told her about free software. Having someone "chatty" along was very helpful. When I wasn't talking was when I was prone to crying.

After the 3am bed check, Katheryn and I headed back to the house. Katheryn said, "You'll want to go back right away in the morning." She told me to know and wake them up and we'd get some breakfast. I didn't think I would feel much urgency, but I said OK.

A slept very soundly from 3:30am to 7:30am. Katheryn was right. When I woke up, I wanted to go back as soon as possible.