I have never written this down before, so I thought I'd do it here.
It was early evening when we took her to the ER. I was freaking out because she wasn't looking at me. She wouldn't follow her favorite toy that I was dangling in front of her face. She wouldn't grab at it. She always tried to grab it. She had been sick for a few days and the pediatrician said it was probably a bug. That's what we figured. But Wednesday was different and we felt like she needed to be seen again.
The nurse came in and asked for symptoms...again. These were different from the ones we gave the pediatrician two days before: bulging eyes, won't focus, acts like she can't see us or anything we put in front of her. They decided she needed a CAT Scan because they thought it could be hydrocephalus. Soon after, they wheeled us down to X-ray, swaddled her in a lead sheet and took a picture of her brain-little did I know it would be the first of many.
Back in the room, the nurses and Doctor were in and out checking, writing, tilting their heads and smiling sadly at our lethargic baby. The resident that was assigned our case came in again, but this time she wasn't alone. I noted to myself that she had an attending with her. Years of ER and Grey's Anatomy had taught me that this wasn't a particularly good sign. They told us that they were right about the hydrocephalus, but that wasn't all. There was also a tumor in her brain roughly the size of a golf ball. The attending then said something I will never forget: "There's nothing more we can do for her here".
They called Duke and UNC to take over and Duke called back first. This whole time Lila wasn't screaming or crying or freaking out. I kind-of wish she were. She laid there just staring and every once in a while she would let out a little whimper. When the Life Flight crew from Duke showed up, it took me off guard a bit. Again, my only understanding of this was from T.V. and when they used Life Flight it was serious. Critical.
They carefully packed up my child into a car seat and strapped it to a stretcher. It was decided that I go with Lila and Ben would go with his parents and meet us at Duke. The Life Flight was an ambulance and I sat up front with the driver. I remember the guy being very nice, trying his best to make small talk-probably in hopes that I wouldn't lose it while he was driving.
When we got to Duke, she went straight to the Pediatric Intensive Care Unit and we went straight to the waiting room until they told us we could go see her. When they finally did let us back into the PICU, Ben and I were met by a team of doctors and nurses. I remember exactly how I felt when we went into the room--I can't describe it, but I certainly remember it. I do remember the way that they looked at us. They knew so much more than we did and they knew that they knew so much more than we did. I had never felt quite so insignificant in my life. They put an EVD (external ventricular drain) into her severely swollen 4th ventricle to drain out the extra CSF (cerebrospinal fluid) that was causing the hydrocephalus that was caused by the tumor. Although they said she could breathe on her own, they sedated her and they needed to intubate. She was "stable" with a heart rate hanging out around 40. I later found out that normal is 80-120 for a child her age. Sometimes ignorance is bliss. So, we sat at her bedside, completely helpless. When we couldn't take anymore of that, we tried to sleep in the tiny waiting room on beds made from chair cushions.
This is what I was doing exactly one year ago. Do you remember what you were doing?
My friend, Valerie asked me some questions about this experience. To read it go here