September 1,2013…”Mom?” Says the doctor (in this childrens hospital, they call you Mom to address you. Keeps it simple for them, I’m sure, to not have to know names, but it’s meaningful, really…it reflects the real intimacy of what you are all IN together. Someone’s Child is in their hospital bed. Not Mr. & Mrs. SoandSo’s child–Mom and Dad’s child)
He had glasses just like Cory’s and disheveled dark hair and eyes that look like, well, like things aren’t good. I wanted to tell him to get some rest. But he uses a matter of fact tone with just a little singsong in it that softens the gravity of what he is trying to say. And says, ” We have things stabilized, but his heart and kidneys are working too hard, and we need to intubate him.”
“If the machine can do the breathing for him (Oh….a ventilator), then it will take the pressure off his other organs so they can heal. We need you to sign here.”
….ok, wait….back this truck up.
Im signing to put him on a machine….one of Those machines. One of the machines on all the hospital TV dramas where families have to decide when to keep them on or take them off at some point. Am I really here? Is that really my son lying there, and he needs a machine to breathe for him?
He signed everything himself up until now. For the last 2 years of battling cancer, he signed all the documents. For every procedure, poke, and prod.
I wanted to consult him….or even consult a familiar face. I looked over at his precious self lying there with things coming out of every orifice….except his mouth. He was inconsultable and I was it. (It was one of those moments I have, occasionally, where I feel like a fraud. I know I am 46 and I feel 50 sometimes,I have a career and 4 kids and a husband and own a house, two cars, two dogs…but, the jig is up! I am Not Really an adult. Soooo, I’m really not qualified to make these decisions. They should really be asking a real adult to sign that paper. Where’s my mother?)
I, Medical Power of Attorney on the scene, never felt more powerless.
(Little did I know that this was a relatively minor sign-off in the scheme of the following two months. But everything is relative…)
“Mom?”….I wish it was him calling me mom.
“So, it’s necessary?”
“Will he feel it? Does it hurt?”
“Oh, no….he will be completely sedated. We will give him something to basically paralyze him temporarily so his body doesn’t involuntarily react, and we will put the tube down his trachea, but he won’t feel or remember anything”
I watched him use a tool that looked better suited for a Kitchen-Aid mixer than a mouth. It was a bit of a struggle to get it in, but he did. And Cory looked peaceful and asleep while the doctor positioned and moved his neck and head to receive the tube, and pull it out and back in to properly insert it.
But he wasn’t peaceful or asleep. He felt and remembered everything.
When he became aware again, was it days?? or weeks?? later (Time is not a thing in the ICU…the Regulator of days, nights, & weeks in one’s brain is officially Off Duty)
…Anyway, it was the first thing he communicated to us (He couldn’t talk, because of the breathing tube, so he wrote it on a white board or typed it on his IPad one finger at a time) was that he was Awake, awake, awake. He kept writing the word Awake. Then he would point at his breathing tube, with pleading eyes to understand, and we finally put the puzzle together….He was awake during intubation. The trauma was evident in his eyes. He would repeat and rewrite it to the doctors…anyone who would listen or read. Then, with his going in and out of awareness and sedation, he would forget he told us….and he would tell us again. Broke my heart everytime. When the tube was finally removed, he told us finally with his voice….he was awake and aware couldn’t move or respond or tell them because he was paralyzed and it was terrifying and it was painful and he was trapped-his word.
I’m sorry. That must’ve been scary. I’m sorry, we didn’t know. I’m sorry, we’ll put it in the chart. I’m sorry, Really sorry. And everyone meant it.
He needed a higher dose to sedate him properly. No one knew. Now we did.
Charlie took a picture of one of his writing communications…He first wrote, “I was awake.” Then sort of wrote on top of it, “I thought I was in a coma.” Then, after all of our repeated apologies, his ever positive, grateful, optimistic self wrote, “I’m here 🙂 ”