Monitoring Hope

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My son, Damon, lay in the hospital bed, his body sometimes relaxed as if in a deep sleep and other times so stiff and toned from the storming and seizures in his brain that it looked as if he were elevated off the bed.  A trickle of blood had puddled and dried inside his ear.   He was bandaged loosely over the flap of skin where the large piece of his skull had been removed, and some blood had seeped through the layers of the bandage. He didn’t have another scratch on his face or his body.  No broken bones.  No bruises.  Just a broken brain inside a fractured skull.  Just.

Tubes had been shoved down his throat, tubes that connected to a ventilator, the white machine that breathed for him.  “Doesn’t that hurt him?” I questioned the nurse with the short dark hair and the huge gold hooped earrings.  “He’s going to gag when he wakes up.”  I tried to swallow my panic, clenching my thumbs inside my fists.  I tried to breathe.

“He isn’t responding,” was her sharp answer. “He can’t feel anything.”

My questions were obviously not welcomed. The ICU nurses had a job to do, specifically, to keep their patients from dying.  I’m sure we were in the way.  But I didn’t know what to do or how to act or what to ask or what to say or where to put myself.  This was my son and  I didn’t know how to help him.  When will he wake up?  When can he go home? I was totally out of my realm. Not able to make anything out of the chaos around me.  I knew nothing of hospitals or ICU’s or brain injuries or comas. I knew Band-Aids and how to kiss the boo-boo to make it better. I stepped back.  I sat down.  I stood up. I watched. I got in the way.  I apologized. And then repeated the same actions.

IV fluids and medicines dripped through tubes in his right arm; and his left arm and chest were hooked up to heart, blood pressure, respiratory, and oxygen monitors.  His temperature was constantly being recorded rectally, adding even more insult to his seventeen-year-old body.  And he had a needle-like probe sticking into his head to monitor the pressure in his brain.  This monitor was the most important one, the male nurse told me.  The only nurse, in those beginning days that took the time to explain, to ask if I needed anything for me, to offer water or an ear for concerns. He was new to the ICU.  In training, under the not kind watch of gold hooped-earring nurse.  Too much pressure inside his injured brain, too much fluid buildup, and he could stroke, he said.

Teams of medical professionals took turns appearing and disappearing in and out of the room, heels clicking on the cold floor.  No one acknowledged our presence except to tell us to step out of the room when they had to re-position him or change his bedding. No one reported to us.  I stared at these strangers whose responsibility it was to keep my son alive and tried to listen in on their conversations. My eyes darted back and forth between each person, searching faces, dissecting medical jargon, trying to figure out on my own what the hell was going on, what they were thinking, and if I even trusted them, if they were qualified.

Each team performed the same tests on Damon, sometimes within minutes of each other, never coordinating with each other, or maybe not trusting each other’s results.  ICU team, neurosurgeon team, nurses going on and off shifts.  “Who’s in charge?” I asked one of the neurosurgeons.  “No one person seems to be in charge.  One team doesn’t seem to know what the other team is doing. You walk in and prescribe one thing and then the ICU doctor prescribes the opposite. Who is in charge?”  Tempers flared. At me.  I learned quickly that being questioned or asking for the hows and whys was a thing they were not used to and could hardly tolerate.

So each team performed the same testing. Sometimes five or six times each day.  We never referred to it then as testing, however.  We referred to it as torture.  Sickening torture. I wanted to vomit.

They pinched his arms.  They pinched his thighs. They jabbed picks under his toenails and on the bottoms of his feet. They screamed his name to startle him and they flashed light in his eyes.  The first time they did this in front of us I had to grab my husband and hold him back from flinging himself across Damon’s bed onto the resident standing on the other side.  “What are you doing?” he screamed.  “What are you doing to my son?”

Damon didn’t move. His pupils reacted slightly to the light — “sluggish” was the word they wrote in his charts– but little else. “No response.”  I watched it all in a nauseated, silent horror, wondering how much pain my son was silently enduring.  Wondering why their methods were so barbaric.  Wondering what kind of sick fucks would inflict pain on someone obviously suffering so much.  I hoped he didn’t feel it, but I prayed he did.

In between the torment and the re-positioning, and any other tests I didn’t understand, I stood at Damon’s bedside, holding his hands, rubbing his arms or his forehead or any space I could find free of tubes and wires.  I talked softly to him, repeating the same thing over and over again, in case he was awake somewhere deep inside his head, “Damon, you’re in a hospital.  You had an accident. You have a bump on your head.   You have something in your mouth to help you breathe.  You’re going to be okay.  We’re all here, and we love you so much.”  Over and over again I repeated those same words, day in and out, just in case that next minute was the minute he awakened. I didn’t want him to be scared. I didn’t want him to panic.

I put headphones on his head and played anything I could think of playing that might cause a reaction, a flicker of movement, any type of response, whatsoever. Never, not even for one second, did I believe he could not hear.  No matter how deep he was inside his mind, or how close his soul was to leaving this world, I always believed he could hear, that he was “in there” (1).

The surgeon who had operated on Damon, ultimately saving his life, was called out of town the day after Damon’s surgery for a family emergency and was gone from the hospital for about a week.  A few days later, the on-call neurosurgeon on his afternoon rounds took us into the waiting room to answer our questions, because we refused to let anyone talk about his prognosis in front of Damon.  How much damage?  “Look at him,” he said brusquely.  “What do YOU think?  He’s not waking up. The damage in his brain stem is severe.”

He told us that he was very surprised his colleague had even bothered to operate at all on Damon when Damon was brought in, in the condition he was because, “We aren’t usually in the habit of operating merely to create vegetables.”

He told us all of this without having yet performed an MRI.

I fell to the floor wailing, heaving sobs, and curled up in a fetal position.  How could we begin to hope when the doctors had no hope?  What was there to hold on to? Searing pain shot across my entire being and that was the only time I looked over the edge into the darkness of the total loss of my son.  It was the only time I almost gave up on Damon and gave into that darkness.

What do we do now, I moaned to my husband, to my daughter, to God, all three of them witnesses to the doctor’s abhorrent remarks.  What are we supposed to do now?  And my husband, completely rattled by my sudden loss of control, scared to death himself, got down on the floor next to me in tears and said, “Karen, we need to pray more.  We need to keep hoping and praying.”

I shot back at him, my voice shrill with panic and a creeping anger, “I don’t know how to pray. I don’t know how to fucking pray.”

I managed to get up off the floor, needing to be by my boy, needing to touch his face, his hands, to smooth his eyebrows. I left that waiting room and I walked back into Damon’s room, tears pouring down my face, and I sat next to his head and I demanded forcefully, almost angrily, in his ear, “Damon, you have to fight for me.  You need to fight.  Don’t do this to me, Damon.  I need you.  I need you to come back to me.”

My eyes flew open in terror as all the bells and alarms on all the monitors immediately began blaring.  His heart rate shot up.  His respiratory rate shot up. His pressures shot up in his blood and in his brain.  All the rates on the monitors were way too high, well over their acceptable limits.  My best friend,  who had been visiting in the room with Damon; a four-year RN who previously worked almost exclusively with trauma patients, froze, staring at the bed, staring at me, believing the worst, believing I had killed Damon with my words.

The nurses flew into the room in a frenzy and kicked me out, and they did whatever it is they do, and once they had everything under control tuned to me as I hovered, wringing my hands and shaking outside the glass of the room, and chastised me for overstimulating him.  “You are causing his pressures to rise,” the female nurse with the huge gold-hooped earrings spewed. “He could have had a stroke.  You need to stop talking to him.”

At first I said nothing but apologized. I was engulfed  in anguish and dread at what had just happened, at what I could have caused to happen. But as I thought more and more about it, I slowly began to concentrate not on what might have occurred, but on what actually had transpired.

I stood up from my corner in the room where I had retreated to lick my wounds, and right then had my first taste of the power inside me, the courage I’ve relied upon every day since then, the ferocity of a mama bear with a wounded cub. I walked over to the nurses’ station, looked the nurse  in the eye and I said with as much confidence as I could muster with my heart still pounding out of my chest, “How can you tell me I’m overstimulating him by talking to him when you tell me he doesn’t respond to anything?  And how can you tell me he doesn’t respond to anything when he clearly responded to me?”

She said nothing.

On that day, for the first time since we received the phone call that Damon had been in an accident, I tasted hope.  I believed my son was “in there”, and that he heard me, and he wouldn’t dare not listen to his mother. I realized it would be up to me, as his mom, to bring him back, because I knew him best, far better than any doctor or nurse or monitor.  On that day I decided that I would not just sit back and put Damon in God’s hands and allow Him to determine if Damon would live or die. I would fight like hell to keep my son.

What saved Damon ultimately was my ignorance.  My lack of knowledge of the severity of the situation allowed me to hope without restraint and refuse to give up regardless of what we were told on each step along the way.  My refusal to believe what I didn’t want to believe and my willingness or my need to only believe in Damon saved his spirit and his soul and eventually brought him back to us.

I never found out until months later, late at night, in another hospital room two hours from home, when I finally decided to Google brain shearing, and axle tears, and traumatic brain injury, that there is no full recovery.

But by then it was too late.  It was too late to stop believing in Damon.

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(1) “In there.”  A common expression of hope describing the prognosis of a brain injured patient.  A patient, like Damon, whose open eyes are not seeing, just staring; who doesn’t respond to commands; who doesn’t respond to much of anything at all is usually considered brain dead or “not in there”.

To me, “in there” was a place behind some secret locked doorway inside Damon’s head where Damon’s soul, what made Damon, Damon, was hiding.    We’d peer into his eyes, trying to see deeper, past his irises, through his pupils, to that secret place to see if Damon was actually “in there”.  We searched and searched for the right key, the right memory, the right song to sing, or joke to make to unlock his door.  In my thoughts, once the door opened Damon would come tumbling out of “there” and no longer be trapped inside his mind, “in there”.  He’d be free. He’d be Damon.  He’d be whole.