18 Months Old ~ The Only Thing Keeping Him Alive ~ Is The Machines

Tears flow shamelessly down my cheeks . . .

In The Beginning . . .

It was December. Snow was on the ground, and I was in the passenger seat of the ambulance. They had picked up Marlon, my son, from Klamath Falls, Oregon, and were transporting us to Medford.

He had stopped breathing before we left Klamath, and we were now rushing to Medford, an hour away. He was too big for the incubator they had. The crew in the back improvised and monitored him round the clock. We were en route to the Pediatric Wing of the Asante Rogue Regional Medical Center.

What do I remember?

• Marlon stopped breathing again. The crew working on him, and communicating with the doctors.
• The ambulance driver kept me talking the entire way.
• Cars not pulling over when the sirens sounded.
• The sound of those sirens scared the heck out of me.
• My ambulance driver was the Mario Andretti of ambulance drivers.

Arrival & Diagnoses . . .

The doors flew open as we pulled into the emergency bay. Doctors, nurses, gurney and ambulance crew all rushed Marlon into the hospital.

I stood in the foyer and froze. There wasn’t anything I could do. All I could think about was my little “gooby man.” His laughter, his smile, that gleam in his eye when he was being a turd. I said several silent prayers waiting for the doctor to come out and let me know what was going on.

After an eternity, the doctor came out and sat down beside me. They had machines hooked up to Marlon’s brain. Measuring the pressure. They had IVs and he knew what the problem was.

Marlon had Reyes Syndrome. Brought on by Chicken Pox. I explained to the doctor that his older brother had Chicken Pox first, 2 weeks later, his older sister, then Marlon.

The doctor explained that his system lacked something that it needed to fight off this virus. At the time, he was the youngest recorded child with Reyes Syndrome. Usually it hit older children and teenagers. The older you are, the chances of survival are much higher.

“What we can do is wait.” He wasn’t sure how much pressure had accumulated in his brain, but he was hopeful. We both sat there. I was numb. I didn’t know what to say. I told him about the shift I felt in Marlon the night before when I was holding him. I explained to him, I didn’t know what happened, but I knew he did not recognize me after that shift.

The look in the doctors eyes said volumes. Looking back, (I believe) the doctor knew that Marlon wasn’t going to make it. Bottom line, he pulled out all the stops to give him that chance.

The Wait . . .

I sat by Marlon’s side for two days, holding his little hand, talking to him, giving him kisses. I would explain how his brother and sister were looking forward to him coming home. I would talk about our dog Amor, and let him know how much Amor missed him. (They slept together)

I wasn’t seeing that happy go lucky little boy. I was seeing a little boy with IVs, screws in his brain, tubes running everywhere. I did not know how we were going to pull through this, but I still had hope.

After the second day, the doctor approached me. He explained that the pressure was very high in his brain. They has misinterpreted the brain results. He also explained that he had no brain activity. “What?” Does this mean its the end?

The Decision . . .

He explained the only thing keeping my little boy alive were the machines. He then asked me if I would give permission to turn them off. My worst nightmare came to be. I was numb. I didn’t know how to react. I didn’t cry, scream, or cuss. I looked him in the eye and told him I needed time. I had to think this through.

He nodded his head and let me know he was available for me. He also asked me to consider giving them permission to send the labs and test results to the Mayo Clinic for research. He explained that it may help save another child’s life.

I walked out of that hospital in shock. I wanted to go to my motel room so I could think. I did not want to be in the hospital around people. I entered that motel room, closed the door and lost it.

I was screaming and crying and asking my father-in-law, if there is a God why doesn’t he just let Marlon go to sleep? Why do I have to decide to turn off the machines? I punched the wall. I screamed and screamed! My father-in-law watched over me, but did not interrupt. He didn’t approach me, all he would say is “I don’t know”.

I went over to my suitcase, took out some clean clothes, and told everyone I was taking a bath. It was the only room where I could be alone. I ran the hot water, and sunk into the tub. I couldn’t stop the tears flowing. Over and over in my head I kept asking God, “Why do I have to make this decision?” I lay there in that tub until the water was cold. My tears had finally stopped and I knew what I would do.

I got out, dressed and came out of the bathroom. I told everyone in the room, that I had made my decision. I told them, I needed to talk to the doctor next.

I left that motel room, walked back to the hospital, and found my doctor. I asked him if he would run the test that shows there isn’t any brain activity. I believed him, but I needed to see it for myself.

We gathered around in Marlon’s room, and the neurologist came in. He hooked up the machine and began the test. I don’t remember what he said, but what I saw, the straight line. There weren’t any dips or activity showing on that screen. I knew the doctor was telling the truth.

As the straight line came across the screen, my tears silently fell. I knew deep down I would say yes to everything.

Finality . . . .

I knew I would always question myself if I didn’t do my due diligence. I turned to the doctor and I told him “Yes, you can turn off the machines.”

I asked him to please wait. I wanted to sit beside Marlon and talk about my love for him and how much I would miss him. I wanted to reassure him that he would no longer be in pain.” The doctor told me to take my time. I also told him, I did not want to be in the room when they turned everything off.

That was one thing I did not think I could take. I was hanging by a thread as it was.

I walked over to his little bedside, and I held his little hand in mine. I brought my head to his head and I told him how much I loved him. I also reassured him that he could let go. I explained how proud of him I was, for fighting the fight. I kissed his little forehead, squeezed his hand, lay my cheek against his cheek and I said goodbye.

Finally, my little “Gooby Man” would be at peace. His findings just may help another little “Gooby Man” with Reyes Syndrom survive.