I posted earlier this week about my fantasy of what would happen when this procedure started. Here's what actually happened.
January 22, 2008
Today is BoyChild’s 16th birthday. Today begins his awakening from the medically induced coma he has been in for the last week. We walk into his room feeling somewhat festive with hopefulness and our eager (if muted) anticipation. We come bearing gifts and cards. We smile, appreciating the balloons and the poster hanging in the window. All the people involved in BoyChild’s care—his nurses, doctors, and various other specialists, have signed the poster that hangs in his ICU room.
The medications that have kept him in his coma for the last week are stopped. Despite knowing that it can take up to 24 hours for the meds to work their way out of his system, we watch anxiously for the smallest movement. For any movement. BoyChild is concomitantly being warmed up as they raise his temperature to normal. They are thawing him. (My son is being thawed out! He’s like a giant fish stick!)
Occasionally, a body part twitches and we hold ourselves with anticipation. There is no way at this time to determine the extent of brain damage. We do not even know if BoyChild can breathe on his own. We do not know what will be awakened once the sedating drugs have worn off. All we can do at this point is wait and watch.
Each muscle twitch is painful—is he going to make it? Does it spell something positive? Will he be able to: walk, make jokes, talk, finish school, recognize us? His body jerks and twitches; we lean forward, we cringe. It is excruciating, this waiting, this hopefulness. It is also hard to contain the despair that lurks behind our hope. He jerks, we jerk in response… Sometimes we sing another round of Happy Birthday. We are horribly off-key.
You have things to do in this life. You have girls to fall in love with, mountains to climb, books to read, cakes to eat. You have to come back. You have to, I whisper into his ear. One day we will laugh about how you came back to life on your birthday. I love you. Come back, little boy.
Doctors and nurses begin to do neurological tests. These early tests consist initially merely of grabbing a nipple and twisting. The point of this twisting is to stimulate a very primitive response: if the brain is not too damaged, and the twist is on the left side, the hope is that the right arm will cross over the body’s midline to stop the pain and vice-versa. BoyChild’s unconscious reactions are both confounding and hopeful. Because the damage has been to his left temporal and frontal lobes, the expectation is that he will respond better with his left arm/hand to a twist on his right side. BoyChild responds more quickly to the twists on his left side. This is not the expected response.
“More quickly” is probably a misnomer. What actually happens is that a person will grab a piece of his chest flesh, twist, and then we all wait for a response. Moments may pass before there is a flutter of movement from his arm or hand or fingers. He does not quite connect his movement to the pain being inflicted. His face is placid as this happens. There is a distinct disconnect between his body and his body’s response. His left arm slowly crosses the midline, but the movement is uncertain and slow. It’s as though some part of his reptilian brain is being stimulated, but not strongly enough to make the assertive response we so want.
To my horror, the medical response to BoyChild’s sluggish reactions is to increase the energy put into the twisting of his skin. One nurse seems particularly invested in twisting his nipples as hard as she can to get an effect. However, each time, his right side seems more responsive than his left side. BoyChild responds in the unexpected, opposite way: rather than the left side of his body responding (corresponding to the unaffected part of his brain), his right side seems more responsive. It is hard to know which part of this upon which we need to focus.
January 24 (2 days later)
BoyChild has begun showing signs of responsiveness. His eyes open; he returns a slight pressure with his hand. However, these signs are sporadic and not consistent with our efforts to make contact with him. When I ask him if he wants his watch, he nods and holds his arm out. But when asked to open and close his hands, to give a thumbs up, he is not responsive. He stares out into a void. This stare un-nerves me. Nurses try in progressively louder voices to command him to do a ‘thumbs up’. Nothing happens. He seems to be awake but does not respond. Sometimes a finger or a thumb twitches in response to the command of ‘thumbs up!’. We tense up each time someone yells, Thumbs up, BoyChild! Can you give me a thumbs up? BoyChild! Do this, put your thumb up! We wait to no avail many times. When the nurses leave the room, we try it ourselves. We encourage him to make a motion. We catch his eye and pantomime and say, Come on, thumbs up! I suspect we each think that because we are using cheery, encouraging tones that he will be more responsive to us.
BoyChild is sitting in an upright position. He looks pitiful with half of his head shaved and covered by huge bandages. Alone with him one evening, I move to the end of the bed and make sure I have his visual attention. I mime opening and closing my fist. To my surprise, he copies the motion. I make a thumbs up. He does this as well. I am ecstatic, believing that this is the beginning of our communication. Tears fill my eyes.
I know that BoyChild may have language difficulties after the brain injury. There is the chance that he cannot hear, that he cannot process what he sees and make sense enough of it to translate it from thought to action. Maybe he simply is no longer capable and will have to learn how to talk again and, worse, maybe he will not be able to talk again. But, this, this copy-catting suggests there is some language-related functioning happening, that he can take in information, process it, and then move his hands in response.
He gives me a lopsided grin and I want to yell to the heavens, I want to clasp him to me tightly. I want to break down into sobs of relief. I settle for grinning back at him and we hold hands while looking in each other’s eyes. It is perhaps the most intimate moment I have ever had with my teen-aged son.