Erik Goes Back, Part 3

January 7, 2013 in Uncategorized

Psalm 103

  He forgives all your sins *
and heals all your infirmities;
  He redeems your life from the grave *
and crowns you with mercy and loving-kindness


We were only home for two weeks and two days. The routine of the hospital was familiar. I sat by his bed, I ate food in the cafeteria, and when it got late, I slept.

I had said on the 5th that I was in family housing, but I was confused. I actually didn’t get into family housing for several days. For the first three days I entered a hospital lottery for the few sleeping spaces they had available on site. After signing up for a daily drawing, you waited to see if you would have a bed that night. If you weren’t selected, there was no place to go.

An ache of hope rose from the spaces we shared. The first night, I lay elbow to elbow with a dozen others in a room crammed with cots. Another night, I shared a closet-sized room with a frantic woman woman who paced more than slept. I met them at the edge, the brittle place where we twiddled with sanity. Unblinking eyes waited for morning, hot moons afloat on seas of tears. We burned holes in the ceiling, sparse light catching the glitter of our eyes, and waited.

Erik’s I.V. was connected to 16 different tubes of liquid medication. They warned me that his tiny kidneys couldn’t process all that fluid and that he would begin to swell. Within a few days, I no longer recognized him. His body lay dressed in only a diaper and socks as they were keeping him cold. Elastic dented his fluid filled legs, and the lids of his eyes bulged. The delicate curves of his ears became oddly translucent, puffed to an unnatural roundness under the pressure from within. I pressed my lips to them and whispered, “Mama is here, Erik. Come back to me. Come back.”

They told me that the cold would keep him unconscious. Only after they warmed him would we wait for him to respond. Until then, he lay spread like a frog pinned down for dissection. Limbs splayed, head faced to the sky, the delicate casing of his skin was tested as it stretched and stretched and stretched.

The ventilator was stressful for his tiny lungs. They switched him to another machine called an oscillator. The oscillator delivered air in tiny, rapid puffs and shook his bed and body like he was riding on a train. The chug chug chug of the equipment rattled our corner spot on the PICU floor sounding like a sputtering engine. Now, when I lay my head next to him, I vibrated with the unnatural jiggle of the aggressive machine. Even more of him had been taken. I prayed, and sought a place of peace.

I drifted more and more towards my new friend, Heather. She was Everett’s mother, and kept the same constant vigil as I. We talked quietly, held hands, prayed, and insisted on making our present lives our history. We plucked at faith, chewed its fruits, and helped one another to insist on healing.

I stood with her at Everett’s bed. In his three-month-old neck was a tube thicker than my thumb. Another was placed somewhere under his sheet. A machine called an ECMO served as a complete heart/lung bypass. “He choked on my milk,” Heather told me, kind eyes aching in a velvet rim of red. Later, she would learn that he had a rare genetic condition. It wasn’t her fault. Everett muscles were weak and he could not swallow. When our children hurt we always blame ourselves.

I looked at Everett’s face as he rested. His thick, dark brown hair glittered at the temple with copper and gold. He was beautiful. He was perfect. The tube in his neck drew out his blood, circulating it through an enormous machine. It was impossible to conceive. It was so unnatural.

Everything that took place there was an experiment. As a teaching hospital, many procedures were new or being tested. Keeping Erik cold was an experiment. Maybe it would help him; maybe it wouldn’t. When rounds were made, I stayed close by. I saw the clutch of doctors, students, residents and interns moving towards us like a common body. I waited to add my voice, and to hear theirs.

There were two doctors on rotation. One was a tall man with a loving face who erred on the side of hope (I came to learn later that he is internationally recognized). The other was a woman, practical and cold, who I came to call a funeral director.Each day, as the man came around he would review Erik’s case, and look for options. Each day, as the woman came around, she planned my son’s funeral. I came to hate her. He hadn’t even been warmed. There were more tests to be done. I would not let her steal my hope.

I ached for the NICU. I hated the NICU. At Children’s Hospital, NICU protocol was to keep babies until they weighed at least five pounds. Erik had been sent home at four. At Children’s Hospital, preemies went home with a monitor. When I had begged for one at Allegheny General, they laughed at me.

I ate my fury. I ate the words of Doctor Death and I ate my rage for Allegheny General. I felt it shooting through me with each heel strike as I walked the halls of Children’s Hospital. I force-fed myself on faith, and the assurance that my son, my only living son, would continue to live.