event: rhythmic bursts

I spent that entire night awake in the children's hospital by Juniper's bedside, in a Google-induced panic - searching the internet for diseases and injuries that could cause Epilepsy. I felt that I had to stay awake because no one at the hospital was monitoring her for seizures.

I was terrified that I had caused this. Maybe I had put her down too hard or shaken her somehow. Maybe I had irreparably damaged her brain. It felt like the worst hangover of my life: I felt horrible and somehow I thought I had brought it onto myself. I spent the entire night stepping between the future and the past, wishing that I could do anything to change them. I drank coffee to keep myself awake and it kept my anxiety escalating. 

The next morning brought some of the first letters from the alphabet that Juniper would ever hear: MRI and EEG. I slept through the morning MRI as Coley went along for the ride. I felt guilty sleeping but, one by one, my systems were shutting down. The nurses had strapped Juniper into what looked like a tiny yoga mat, wrapped around her body to prepare her for entering the giant magnet tunnel. The MRI took hours. We then headed back to the room, with machines and IV bags in tow.

I saw some sick kids in the hallway and imagined the torture they had been through. I tried not think of this, but it invaded my mind before I could stop it. I imagined them fighting cancer and other horrible diseases. I imagined them screaming and crying as painful treatments were applied without them understanding why. I could hear some of them crying in their rooms as we walked down the hall, re-enforcing my thoughts.

Later that morning, a smug neurologist with a small black doctors bag and a stethoscope walked into Juniper's hospital room. I have no idea what he had in that bag. I imagined lobotomy tools. He informed us that Juniper's MRI was normal. Then, with confidence, he exclaimed that Juniper had Benign Sleep Myoclonus. He even wrote it on a white board in the room. 

I can't explain how, but I knew he was wrong.

We showed him the video of Juniper seizing. He told us that this condition closely resembled seizures. Nicole and I protested and told him that she was never sleeping when the events happened. He wrote "does not always happen while sleeping" on the white board. Yes, he actually wrote it on the white board like he was teaching a couple of elementary school children how to sound out words. Clearly Coley and I looked skeptical. He looked at us and said "well I guess we could still do an EEG to confirm." 

Yes, Doctor, let's do that.

The EEG tech was methodical. He diligently arranged adhesives, wires, gauze and leads on Juniper's hospital bed. I remember him talking about all of his healthy kids at home. His process made it seem as if he was a veteran, but his bedside manner made it seem as if he was brand new at this. He told us he had been an EEG tech for sometime over 10 years. God, all of the poor families that had to hear about his healthy kids. 

Juniper now looked like a tiny robot medusa, dozens of wires coming from her head. I looked at her in the camera that the tech had left behind, for remote monitoring. Then, my eyes focused on Juniper's brain waves.

What was going through her tiny mind? Did she feel the electricity surging through her brain? Did she think something was wrong? Was she afraid like I was? 

I glanced back and forth between Juniper and the monitor as my brain tried to process what her brain was processing. It wasn't long until the first seizure started. The first of a now predictable cluster of three fifteen second myclonic seizures. 

I watched the EEG record the electrical storm in her brain.

It resembled what it might look like if you shocked someone with a taser while they tried to draw a line with the computer mouse. Or perhaps the signature of some heroine addict on a recovery facility's electronic intake form. 

Beside the lines was an update in small, pink courier new text that read:

"Event: Rhythmic Burst." 

The waves rapidly shot up and down in deep and narrow peaks and toughs. My heartbeat began to match them. I knew the doctors knew what Coley and I knew now.

We waited for the same doctor to come back into the room and declare his mistake, but he never did. Coley and I, frustrated after witnessing three seizures on the EEG and waiting hours for a response from the hospital, demanded that Juniper be placed on medication to stop them. 

[once again, we will jump back to some lessons for the next few posts]