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three minute read
a new life
Perched in my recliner I watched endless procedures and after a while settled into the rhythm of care. There were several exciting but then also disappointing moments when the nurses would test John's ability to breathe on his own by lowering the output of his ventilator...only to find out he wasn't able to continue breathing so they would reset it to full capacity. To know this giant machine sitting next to me was keeping my child alive was humbling to say the least. There was a semi-steady stream of family coming through with everyone talking in very hushed tones and not really knowing what to say. What do you say?
At this point I had to face the reality that, like Luke, John may not come out of this, and if he did, may not have any quality of life given the amount of time he'd been without oxygen. I remembered the ten years of watching Luke in a coma, lying in his bed or having been moved to his recliner, but not responding to voices or actions. It was torture to watch it when it wasn't my own son, so thinking of John in a similar state was something I didn't think I could bear. My prayers then turned to, "God, please let him have a decent quality of life, or please take him home."
I wasn't giving up but I knew from experience the reality of what life would be like for him and for our family if he remained non-responsive, and I had to be realistic about what was fair to him. These are thoughts you never think you'll have - this stuff happens to other people, not us. Not with a 19 year old. The situation wasn't good and the doctors were very refrained in their willingness to give us any prognosis. More waiting.
the art of breathing
For anyone who is divorced and re-married, you never imagine (at least I never did!) you may some day be in a small, chaotic ICU room with your child in touch and go status with your ex-spouse and current one, for days. This is when the work my ex-husband and I did as parents to maintain a healthy and positive relationship for our boys paid off in spades. There was enough tension in the situation that if we'd had to navigate around each other it wouldn't have worked. My husband and ex-husband have also built a good relationship so I was extremely lucky to have the support of both - and needed it.
As promised, the main doctor came into John's room 72 hours, almost to the minute, after they had started the cooling process. He said they would stop the cooling and let John's body temperature come back to normal, then slow the sedation medication and see if he would start responding. I suddenly thought about the withdrawal symptoms John may feel if he did come around and asked the doctor what would happen. He felt that John had been out long enough that any withdrawal symptoms would have "passed" and that they'd be watching for anything that would indicate he was in pain. I couldn't really imagine how he couldn't be in a lot of pain but had learned to trust the people who do this day in and day out so let it drift to the back of my muddled mind.
A few hours later the nurses were changing shifts and going through their handoff process. The nurse coming on checked John's vitals and wanted to start tapering the sedative medication even more. As a result John started moving - his head and arms were moving but his eyes were closed - the nurse quickly got the wrist restraints in case he woke up. She immediately tested his breathing ability again and it had improved to the point where she called in a team to remove his breathing tube. It all happened so fast we didn't have time to even process what was going on, but the room was suddenly full of people again and myself, my husband, ex-husband and younger son all backed out of the way to let them do what they needed to do. I'm pretty sure I held my breath for a better part of five minutes wondering which way things were about to go. This was it.
Watching the team prep for and then also remove John's breathing tube in the span of only a few minutes was dizzying and loud, but amazingly orchestrated. When the nurse finally pulled the tube and it started coming up from John's throat he choked and coughed and started moving around -he was clearly in pain and agitated by the process. His lips were hugely swollen and raw by this time and I could only imagine how sore his throat must have been. The tube came all the way out and he was trying to reach up with his hands which were thankfully strapped to his bed. I wasn't sure but this seemed like a good sign that he was clearly very uncomfortable.
One of the nurses stepped close to his bed and leaned over talking directly into John's ear, "John, open your eyes if you can hear me! John, squeeze my hand if you can! John, give us a thumbs up!" she commanded. My eyes were glued on his hands and I thought I was imagining things when I saw his left thumb move a little bit in an upward direction. "He moved!?" I said only half believing it. Again she said, "John, give us a thumbs up if you can hear me." and this time he did - it was a half-way thumbs up and very slow but it was definitely intentional and it meant at least he could connect voice with action which was all I needed to know at that moment. We all just kept repeating, "He moved, he moved" and watched the team work to suction lots of junk from John's throat and mouth - he kept coughing and spitting up which to me was the best thing I'd seen in three and a half days.
A while later, a social worker came to the room and was talking about next steps and insurance and I'm sure I seemed really slow because for the life of me I couldn't understand what she was talking about or needed or what she was telling me to do. I thought maybe she had the wrong room because she was talking about resources and programs and "in-network" but all I knew was my son could lift his thumb after two overdoses in three days...my brain was maxed out right there. Recognizing my inability to comprehend even the simplest instructions, she left and said she'd come back another day, which sounded great to me.