Thursday, April 30, 2009

A Tale of Three Seizures

This is a gruesome, gory, medical story. It's two years old, almost exactly. And I need to share it. There's something in telling these stories that heals.

Phase I
It began with puking, 36 hours, every half hour on the dot. The docs congratulated me on keeping him well hydrated. He stopped his clockwork regurgitation for Blue's birthday. My parents visited. He laid listless and tired on the couch.

Phase II
The next morning he was sparky and alive. When he requested yogurt, I delightedly skipped off to the kitchen to fetch it.
A sharp garbled cry. And then Huck calling to me to dial 911.
"Are you kidding?" I asked.
"My God. NO!!" He screamed.
I dialed, then looked, a method I recommend for all moms.
Huck had him in his arms. He was curled up. Stiff yet vibrating. His mouth was foamy. He wasn't breathing. His lips were rapidly turning blue.
The operator came on the line and I could not speak. I could not breath. I could not stand. I could not sit. I could not exist in any way that I knew of. I handed the phone to Huck. He juggled all of it in his hands, while I circled the living room, moaning, half standing. A cry finally came from me and I could hear the operator say, "It sounds like he's breathing now."
"No," Huck said.
"But I heard a cry," She noted.
"That's my wife."
I heard those blessed sirens and flung open the door.
Coyote breathed a little. His body unclenched.
The medics ran full tilt in to the house. This look passed between them. One scooped up Coyote and ran back out. I jumped into the ambulance in my socks.
Huck, he of clear heads, dressed Blue, shut doors, hung up phones, put on shoes, and followed in the car.

Phase III
The ER was empty, except for us (and people wonder why I love small towns). The Docs asked questions while Coyote groaned and batted his eyes on the table between us. They assumed a febrile seizure. But the medics were sure it wasn't just that. And also, we kept explaining, he HAS NO FEVER!

Suddenly, it began again. The stiffness, the curled body, the shaking, the bluing, the horrific bluing of his lips. Only this time, I knew he would likely survive.
To stop it, they sunk him into a chemical coma. I sat in the waiting room with Blue, while Huck stayed for the spinal taps, the MRI, the CT, the yadadada. Everything came back negative. Which was positive as far as I could tell. No meningitis: YEAH! No brain tumor: YIPEEE!
He stayed unconscious, however, and we spent the night. I watched Oprah's Earth Day episode in his bed. Did you know that if we all stopped taking receipts at gas stations we'd save 14 billion trees every second?

Phase IV
When they pulled him up out of the chemicals, all he wanted to do was nunu. I'd weened him in February, but he still wanted that ultimate comfort. And who was I to deny him? I hopped right up on that bed and let him on.

And that is how I learned that people bite down really really hard when they are having a seizure. I shrieked and EVERY doctor and nurse in the building ran to us. It took several hands to extricate me! They calmed down once they knew where all that blood was coming from. I did not, however. They offered stitches once the seizure subsided and we all knew the child was okay. But I opted for the surreal "comfort" of a latex glove filled with ice, and then a bandaid. Coyote has never nunu-ed again.

Phase V
I decide to host Blue's birthday party anyway. The hall was rented. I'd made the world's awesome-est, glittering alligator-in-a-pink-boa pinata. And the list of phone calls to cancel was too daunting. What I remember: sitting, empty and exhausted during musical chairs and not standing when the music began. Kate made a cake. My friends invented games for the kids. They set up. They cleaned up. And my poor little Blue and I schlepped back to the hospital when it was all over. What a shitty little birthday! Luckily Grandpa Richard was there to perk it up for her.

Phase VI
They put him on phenobarbital, saying it would make him uncoordinated and grumpy but halt the seizures. He was two and a half! So he was REALLY REALLY two and a half. We popped a helmet on his noggin and tried to not get bitten by the world's tiniest monster. He hated that phenobarbital! He would not take it! Twice a day we had hour long sessions trying to get him to swallow that stuff. I would weep, begging him, the threat of his blue lips driving me insane. I bought every sugary drink in the store to help him get that stuff down. Blue remembers those days with such sweet fondness: "Remember how sometimes sugary drinks can be really healthy? Mmmmm." Sheepish about the volume of sugar-crap I was buying, I insecurely told the 18 year old cashier what noble cause it was for.
"Does he take more than one kind of medicine?" The stupid kid asked.
"Does he refuse to take all of them?"
"No, just this one."
"Well, I'd listen to him if I were you. I did that when I was three and my mom had fits over it. But it turned out I had a life threatening allergy to the stuff. Kids know, you know."
Yeah yeah yeah, that's how I parent, you pimply nincompoop! But this is life and death! I smiled politely and left with my burgeoning cart of red flavored high fructose corn syrup.

Phase VII
The rash that followed did not concern the doctors. After two weeks of me not working and yet paying for daycare, we got the go ahead to put him back in with his less wobbly peers.

I stepped back in to the office, to lots of support, and to the phone ringing. It was the day care. Coyote suddenly had a very high fever and wasn't breathing properly. I ran right back out the door I'd entered just 3 minutes before. Luckily, there was lots of construction so the 20 minute drive was elongated to 40 minutes. It was not a calm, soothing trip and what the workers heard were not my most supportive comments.

Phase IIX
The week that followed involved daily visits to the doctors' office in which all the pediatricians gathered in our room to dance and sing "What do you do with a problem like Coyote? How do you pin a diagnosis to the ground?" They phoned their colleagues from various pediatric specialties. They pulled out their text books. They were in doctor heaven! This was no common cold. This was not a butterfly stitch. This was M*E*D*C*I*N*E! I don't think we could have gotten better care, even at the bigger hospitals.

Coyote indeed has a life threatening Phenobarbital allergy. His skin separated from his tissue. Each item on the list of "things to look for" came upon us. Goopy eyes: run to the doctor! Coughing: run! Coma: how can you tell?
At the end of that awful week, I looked to the backseat of our jalopy to see how Coyote was. He was slumped and listless, non-responsive. We flew to the doctors' office. They saw me running, Coyote flopping in my arms. They threw open the doors. We ran into an exam room, the doctors close on our heels.
They checked him. And then they left. One stayed, sat down, sighed.

What! What! What!

"This has been so stressful, hasn't it?" She began, calmly.
"I felt like I handled it well the first two weeks and now I'm a mess."
"Honey. Coyote is a very tired little boy. He is napping. I suggest you go home and do the same."

End of Story.

Coyote has been seizure free since. He had more tests, all wonderfully negative results. They don't know what causes these things. Perhaps the brain is just trying to "reboot"? He was never tried on another medication. Our current doctor says that if he makes it to five (3 months away!) without another seizure, we should be in the clear. I think we will be.

During this all, another cashier asked about Coyote's rash. And I told a bit of the story. She said the same thing happened to her when she was kid. Three seizures after a bad illness. She'd never had another one. By then, I was ready to listen to the cashiers, no matter their age or station. And I decided then that was the case with my boy. May it be so.

This is not a tremendously funny story. It's a story that haunts me when I'm reminded of it. And there have been several reminders this week, including the anniversary.

1 comment:

  1. Wow. I can't imagine going through all of that. Glad the little guy has been healthy since. I had a serious and unexplained seizure on my first birthday. All the tests occurred, etc. No answer. Never happened to me again. Hope the same is true for him!



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