Guinea Pig Zero:
Page 2 of an excerpt from
For two days Jesse lingered in an induced coma while a ventilator controlled his breathing. He weighed only 97 pounds, down from his healthy weight of 120. His old medication only partially lowered his ammonia level. On Thursday morning Jesse's new medications had arrived, and the doctors gave them to him along with a special nutritional formula through a gastrointestinal feed. Within 24 hours Jesse's ammonia levels started falling. We waited at this side as he began to regain consciousness, and his first conscious act was to motion for us to change the television station -- Jesse was back. Within a day he was out of intensive care with normal ammonia levels, something he had never known his entire life. He was now ordering and eating food like a teenager -- again, someting he had never before experienced. We were ecstatic. When his specialist came I shook his hand and told him that he had a medical miracle on his hands. A week after nearly dying Jesse was back in school full-time with newfound zeal for life.
By early February, 1999, Jesse had recovered enough strength to consider returning to work, but then came down with a serious case of influenza. Illness often trigered Jesse's metabolic disorder, so I stayed home to keep an eye on his condition. Jesse recovered within a week and was back in school. I had him tested twice while he was ill and his ammonia levels rose only slightly; the new meds were working wonderfully. He was also kind enough to pass the bud on to me; it was the sickest I'd been in twenty years, with a fever for six days and fatigue for four weeks.
Near the end of that February Jesse returned to his part-time job as a courtesy clerk at a supermarket. On Saturday the 27th he called me at 11:00 p.m. for a ride home. I picked him up in my work van and on the way home we had a fateful conversation. I had been asking Jesse to find out if he job would offer him medical insurance once he graduated from school that May. Being a typical teenager he had done nothing to inquire, and I told him in no uncertain terms that he needed medical insurance if he didn't intend to continue his education. At the time we believed Jesse would not be covered under our insurance once he left school. He rarely raged at his illness, but this time he flung a half-full bottle of soda against my windshield while cursing his disorder. I angrily gave him a backhand punch to the shoulder and chastised him. We were only two blocks from home when Jesse flung open the door and told me he was jumping out. "Whoa, wait unti I stop," I said, but before I could come to a stop he gave me a look like he was jumping and out the door he went. All I could envision was Jesse falling under the van and me running him over. Sure enough, even though I had nearly stopped, he fell, and then I could hear him screaming that i was on his arm. Now, my van is a work van loaded with tools and weighs six thousand pounds. 'Oh God, No!' I thought as I threw the van in park and raced around the back of the van to find Jesse's right arm and elbow pinned under my right rear tire. I made certain that his body was clear and rolled the van forward off his arm. The kid was crying in agony. As I cradled him in my arms, I cried, "You idiot, what where you thinking," and "Jesse, I'm sorry." I knew he would need an ambulance. His arm was a red mess from wrist to upper arm with his elbow area gouged out. The tire print was evident on the underside of his arm. A woman who had witnessed what happened while driving asked if she could help, and I asked her to please call 911. A neighbor, hearing the commotion, came out and offered his help. Another passerby offered me his cell phone and I called my wife. Within minutes the paramedics arrived, strapped Jesse to a gurney and whisked him off to the hospital. The police informed me that I had done no wrong, that I could not control his actions, but it was all I could do to drive the one block left home. I had been there to help Jesse through his near death experience in December and through a serious flu only to nearly end his life in an accident.
I was shaking and emotional as my wife Mickie drove me to the hospital. Jesse was okay -- he hadn't even broken his arm! He did suffer extensive road rash and a serious wound to his elbow, but he recovered full use of his arm following two days in the hospital and a month of physical therapy. I was an emotional wreck the week following the accident; this kid was something else. His sister told him that if he caused me to have a heart attack she was going to kill him. A month later I got word from our insurance company regarding Jesse's status if he did not continue his education. He was covered until age 25 as long as he remained our dependent. I joked with him that I had run him over for nothing. He was proud of his war wound with dad. God, what a relief it was to see this kid bounce back again.
In early April 1999, Jesse had another appointment at the metabolic clinic. While there, the subject of gene therapy and the clinical trial at the University of Pennsylvania came up gain. Jesse and I were both still very intrigued. I informed the doctor that we were already planning a trip to New Jersey in late June, that Jesse would be 18 at that time, and to let Penn know we were interested. I received a letter from Penn in late April firming things up, and by late May our visit was set. We would fly in on June 18 and he would be tested on the 22. Jesse was none too happy about flying on the 18; that was his birthday and he wanted to party with his friends, but a few days later he told me it was okay. That was good since I'd already bought all six of us tickets a month earlier....[Read the rest of Jesse's Intent in Guinea Pig Zero: An Anthology of the Journal for Human Research Subjects]
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