Charlie G Story – Pt. 2
When I got to the hospital, a doctor (It would turn out to be Robert Cullen, head of pediatric neurology) came out and told me that Joy had been dead when found by her mother, but that the police and paramedics had been able to get her heart beating again. She still was not breathing on her own and she had suffered massive brain damage from the lack of oxygen. He then went back into the operating room.
After countless hours (I do remember homicide detectives questioning us because Joy was not suppose to make it, and then going to get the chair), we were allowed to see her.
My beautiful, blonde haired, blue eyed daughter, who I had just spent the day laughing and playing with, YESTERDAY, lay unmoving on the bed. Joy was in a coma. A bolt had been drilled (drilled!) into her head to ease and monitor the swelling of her brain. Over the next few weeks a hole was cut into her throat and a tube inserted so a machine could breath for her and her stomach was cut open, a tube inserted and then stapled shut, so liquid food could be poured into her to feed her. After a couple of months, finally, Joy came out of the coma.
It would have been better if she’d stayed sleeping.
Joy was now in a vegetative state, blind, deaf and paralyzed as her body struggled with the erratic signals it was getting from her brain. Dr. Cullen and 2 other neurosurgeons asked us to sign a no-code, allowing Joy to die. They said she had only erratic electrical signals coming from her brain stem and she could lay like that for 30 or 40 years.
At first Becky and I both disagreed, we were sure we could get her to ‘wake up’.
I rubbed hot and cold wash clothes on her arms and legs, telling her “This is hot Joy” or “This is cold, honey”. I dipped a q-tip in sugar water and lemon juice, rubbing it on her tongue. I took colored gels from a spotlight at work and shined different colored lights in her eyes, telling her what each color was. I read every medical book and journal on neurology I could; even finding an experimental drug that was being used on brain damaged patients in Europe, to open new neuro pathways. Her doctors agreed to try it, saying, “Why not?”
It didn’t help.
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