[and we return to our story]
That night I would have the first of many conversations with Juniper's neurologist, Dr. Luke - who happened to be the neurologist on call for CHOA that evening. Dr. Luke would turn out to be a savior for my family. She would also have the pleasure of repeatedly telling me the most difficult news of my entire life. This one was par for the course.
We didn't have this conversation in person, but rather over the phone at the nursing station. I stood there amongst the medical professionals as they dictated their patients records.
"Juniper has Generlized Myclonic Epilepsy" Dr. Luke told me, as if she was giving me a diagnosis.
Epilepsy? That doesn't seem so bad, I thought. Isn't that just a bad case of the seizures?
Dr. Luke went on: "We are going to start her on 1.4mls of phenobarbital. We start by giving her a loading dose of 10mls tonight."
10mls? Does she even have that much blood in her tiny veins? And what is phenobarbital?
Yes, she does have that much blood in her veins and phenobarbital is a class C barbiturate, an old school heavy tranquilizer that can cause respiratory failure if given in high doses.
I was silent on the phone.
Dr. Luke knew better than to ask if I was still there. She continued. "We will have to run a series of tests to find out the cause of Juniper's Epilepsy." I quickly learned that Epilepsy is more of a set of symptoms than a diagnosis. "We will need to run some blood and urine tests and a lumbar test." "What's a lumber test?" I asked. "We will need to take spinal fluid," she explained.
"A spinal tap?"
Tears began to stream down my face.
A few moments later, I hung up the phone and returned to the room. It was one of those walks where things get too much to handle so your brain turns off everything but the motor skills to take a few steps forward.
The nurses loaded Juniper with phenobarbital and she slept quietly in her "nest" in the middle of the large hospital bed, wires still protruding from her head. I stared at the peaks and valleys on the EEG monitor like they were steep mountains for me to climb.
I did my best to catch sleep here and there, but I was terrified of what the future may hold. It's hard to keep your mind at peace in times like this. The closest thing I can compare it to is the feeling I got when my granddaddy got cancer, or when I was told we needed to put down my childhood dog. The future has to come and you can't always control what it brings, but damn it's hard to sit still and let it happen.
The next day Dr. Luke visited us as Juniper slept, high on all the drugs with gauze and wires on top of her head. Juniper looked like a little robot recovering from having circuitry ripped out of its head.
Dr. Luke didn't look like I had envisioned her when we talked on the phone the night before. People never do. She was a small-framed, younger woman with thick, oval-shaped glasses. She spoke with the academic confidence and directness of a fellow fresh out of her residency. She also had an energy about her that made me feel confident that I could trust her. Ultimately, I had to trust her with my little girl's life.
She reiterated what she had told me the night before. I distinctly recall the part about how this could "just be seizures" or something far more serious. I recall hoping for the former, but expecting the latter. I am the type of person that prefers to think of worse case scenario in order to prepare myself. If it's better than the worse possible scenario then I can be pleasantly surprised. At the time I didn't realize how accurate my expectations would be.
For the next few days, Dr. Luke visited us on a daily basis and talked to us about hypotheticals upon our request. Nurses came and went, drawing blood and catching Juniper's piss in little clear plastic bags.
When they came for the spinal tap, Coley and I left the room. I was told she would never be able to associate my face with the pain, but I didn't want to associate her face with the pain anyway. And in the off chance they were wrong, I didn't want to be the boogeyman in Juniper's mind.
Coley and I spent half an hour of a sunny spring day in a colorful courtyard, as the doctors dug into Juniper's spine.
A small child played in the garden, plucking petals from flowers and setting them to sail across a little fountain, as his mother spoke on her mobile phone. The boy's mother was very distracted. I was sure she was telling a relative some tragic news about one of the boy's siblings.
Coley smiled and played with the boy, working hard to distract herself. I worried that Juniper might never get to set little leaves and petal sail across a little fountain. In my mind, in those moments, Juniper would never be capable of achieving the boy's curiosity. I am not sure why, but that was where my head was at the time. I was like a cold old man to the boy. Like some kind of cynical, pissed-off alcoholic dying from liver cancer without a single soul by the bedside. I avoided the his efforts to engage with me.
Normally Coley would have said something, but she let me grieve.