Sunday, June 28, 2009

Stories Save Lives

In February, while I was still at school, my younger brother Kevin came down with mononucleosis. When I told my friends this, it started a flurry of "who-had-the-worst-mono-experience" stories. My fiance talked about the weeks he spent in bed, and how much weight he lost (a dangerous amount, since he was too skinny to begin with). Another friend discussed in detail the lesions that formed in a certain unmentionable area when she contracted mono. I was just glad my brother's case wasn't that severe. He slept a lot, missed a few weeks of school, and was a little more prone to strep throat afterwards, but other than that he was fine.
But the worst mono story I ever heard came to me a few months later, during my first week home post-graduation. I sat on my aunt's couch, listening to her friend Lisa recount the horror story her son lived through during his first year in college. It started with a fairly common case of mononucleosis. The doctors performed a strep test when he first arrived at the hospital, and it came back negative. But during the next few weeks, they did not repeat the test. A week after the mono hit his system, he was diagnosed with meningitis. That, in turn, became spinal meningitis. And, as he was carted back and forth through disease-filled hospital wards, he picked up a strep infection on top of that. But this wasn't just strep throat, oh no. The infection traveled down into his heart, and from there up into his brain, causing horrible headaches, and a constant sensation of pressure behind one eye.
I still remember the look on his mother's face when she told us about the doctor's phone call to her, while her son was in for a check-up. "He told us they'd have to do brain surgery," she said, "And my knees just buckled beneath me. It was the worst day of my life." I was amazed that she could share such a story with us. Mom only knew her a little through my aunt; I hardly knew her at all, but here she was baring the hardest moment in her life to us.
I stored the details of the story away. For one thing, it topped any of my other friends' mono-horror-tales. But nearly a month later, when my brother caught strep throat again, the details began to return to me.
At first the strep seemed run-of-the-mill. His throat hurt, he had a fever, he spent most of the day in bed... The anti-biotics didn't seem to be working, but somewhere around day four they kicked in. By the morning of day five, he seemed fine, ready to return to work the next day. Then he took a nap that evening, and awoke with a fever of 102.5. Except for the strep, and the fact that he had mono several months before, nothing about the two cases was similar. But I heard Lisa's story replaying in the back of my head. That evening, I asked Mom in a lowered voice if maybe we should take him to the E.R.
"It's just a fever," she said. "And it costs a lot of money to rush in there. If you need it, of course, it's not a problem; but I doubt he needs it. He can go see the doctor tomorrow."
The next day, the doctors pronounced him strep-free, but a new problem had arisen. A rash had started on his stomach, so thick that it looked like a patch of freckles, the kind many of my pale, red-headed acquaintances sport. He showed it to the doctor, who pronounced it a drug-rash, and switched his anti-biotics.
By the time Mom returned from work that day, the rash had spread all over his torso, down his back and legs, up his arms, and was now creeping along the sides of his neck. He also had a splitting headache, and complained of harsh pressure behind one eye.
Mom went back and forth between phones, calling all the doctors and nurses we knew. No one recognized the symptoms; no one had any answers. "It's stump the doctor day, apparently," Mom said. Much to her embarrassment, she even looked up his symptoms on Web MD. "It could be scarlet fever."
He laughed. "Yeah, right."
"People still get that," I said. "It just doesn't tend to be fatal anymore." The symptoms didn't match that either, though, according to the doctor's next phone call.
Finally, although I knew I'd sound paranoid, I grabbed Mom's arm as she passed by with the phone. "I know this isn't exactly the same," I started, "But don't you remember Lisa's son? When he got mono, then a strep infection, and he had to have brain surgery for it in the end?"
Her eyes went wide. "No. What?"
The story had horrified me so much, I was surprised she'd forgotten it. A few minutes later she was on the phone to Lisa's house. Lisa didn't answer; her son picked up the phone.
"I know this is going to sound strange, considering I don't know you..." my mom began. "I'm a friend of your mother's. Is it okay if I ask you some personal questions about when you were sick?"
By the end of their conversation, he'd detailed his own illnesses, and Mom had recited Kevin's symptoms. "We're trying to decide if we should take Kev to the E.R."
"I'd already be in the car," he said.
So in we went, expecting them to shoo us away with an easy answer.
They started off with a spinal tap. Mom and I winced in the hallway as they performed it. Then came the blood tests, the IVs... By one in the morning, Mom convinced me to go home. The doctors said we wouldn't know anything for at least a day.
The next day, near the end of my shift at work, she called to say they were transferring him via ambulance to the Intensive Care Unit at Children's Hospital. My blood went cold. I guess we've been lucky - I've never known anyone in my family to be rushed to the hospital before, much less in an ambulance. And I certainly never imagined my first trip to an ICU would be for my younger brother. Young people were supposed to be healthy.
I don't know how many times I called Mom that night. I was so frustrated - I wanted to go to the hospital and wait for the ambulance to come; but by the time I drove out there, it would probably already have arrived. I wanted to meet them at Children's, on the other end, but by the time I got there I wouldn't be allowed in. Sibling visiting hours are 10am to 9pm. It was close to midnight.
I finally went to sleep around three, only to wake bright and early to my 9am alarm. I drove straight to the hospital. My being there wouldn't make the answers come any faster, wouldn't make a diagnosis easier, but it seemed like it would. I felt more useful crouched in a chair beside his bed than I did at home with the telephone clutched to my ear.
The doctors still didn't know what it was. His blood pressure had dropped severely the night before, which was why they brought him to the ICU. He couldn't leave the intensive-care ward until his blood-pressure stabalized without the aid of medicine.
That day, and the next, were the worst. An entire group of infectious disease specialists discussed him in an "interesting cases" meeting on Friday. Nurses, interns, residents and plenty of doctors pitched in. Still, no one came up with an answer that completely matched his symptoms. It could be a strep infection, a virus, some kind of bacteria... Their best guess was viral meningitis, which is luckily not as severe as the bacterial kind. But it was still only a guess.
Today he was moved from the ICU up to the regular wing of the hospital. He'll probably have another day or two there, but for the moment he's "out of the woods," as my father put it.
We may never know exactly what my brother had. "SSV," his primary-care doctor is calling it for the moment. "Some sorta virus" (the slightly more technical term is "viral syndrome"). Thankfully, it was not as severe as our friend's son's mono-tale. Mom keeps thanking me for remembering that story, since it pushed us to go to the E.R. But personally, I'm more thankful to Lisa for telling the tale.
Don't be afraid to share painful experiences. Those stories can save lives.

2 comments:

  1. Actually young people are more in danger of falling sick because of their weak immune system, hence all the vaccinations. But I'm glad your brother's ok. *hugs* Much loves. <3

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  2. Well, I should clarify... By "young," I meant 18 :P heh

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