Tuesday, December 05, 2006

Deal or No Deal

We were sitting in the hospital room a few years back when he got the page. The Physician excused himself and made the call. “She should have been a DNR (Do Not Resusitate) a long time ago”, he said. And his voice trailed off. His words would remain in my head as I wondered what the scenario was that would have him respond in this manner. These were words I would not forget.

I remembered them today at a holiday party for special needs children which was held at a local university. Dear Son and I were invited guests, as were many of the children who had stayed at this particular facility, at one time or another. The facility, was not in any way affiliated with any academic medical center or even the university, but rather provided hospital type care days for sick and technologically dependent children, namely those on ventilators.

As a result, many of the children today, were severely disabled and in wheelchairs; the older ones had g-tubes with their feeding bags hanging behind their heads, their feeding alarms going off like one big symphony. The younger ones, in all kinds of colored wheelchairs, some motorized and some not, like Santa’s workshop on wheels. It was a sad but interesting group.

There was one boy in particular, that was sitting at our table. He looked to be about five, I suppose, give or take a year or so. He had blondish hair and beautiful eyes. He was leaning back in his tilt wheelchair, his small frail body much too light for his chair. His jeans were too large, probably to make them easier to put on. His ventilator tubing hung down over his stomach and along the sides of the wheelchair snaking around to the back, like a giant octopus had attacked his chair. The boy had a trach, hidden behind a terry cloth towel, every wheelchair mother’s best friend. His neck was long, twisted, and supported, in an odd kind of way, like someone had pulled up too hard to the right, broken his neck, and left it that way. I couldn’t help but notice it while trying to see his name tag. I asked his mother his name. “Adam” she said, and I began to talk to him. I could see his pupils responding to my voice, but he refused to look at me, assuming I would quit talking to him soon. His body lay in the chair and the only movement I could see were his fingers, from time to time.

The ventilator tubing upset me. It had only been a couple of months since Dear Son had been attached to one himself. The images of Dear Son lying in the hospital bed dying were too close for me yet; I wanted to turn away. Then all of a sudden, chaos erupted and the mother quickly stood up, whipped out the suction device and started suctioning him. I nearly vomited. It was always stressful for me, hearing the droan of that machine, while Dear Son’s face turned red, as he choked, gasping for air, while they took their time to suction him. I always had to leave the room for that since it was so stressful. I felt like a horrible mother when I did that, not staying by his side to hurry them along but instead leaving the room, while that machine sucked the life out of him and out of me. Dear Son would get so upset and yet to them, it was just another day at the office, and for me, well, they couldn’t do it fast enough.

My mind quickly shifted back to the party and Dear Son.

His response, was much different. He turned his head when he heard that sound, frantically trying to place the noise, unable to attach it to anything. I asked him if he remembered the sound when he was on the ventilator. Dear Son smiled, thankful I made the connection for him. I knew he didn’t forget but I had made a promise to him after we left the hospital and got home; a promise that we’d never do that again. It was a promise, I had hoped I could keep.

Another woman sat down at our table and Adam’s mother began to chat with her. I would continue to talk to the boy, finally earning his trust. He began to gaze over at me, in my direction when I spoke.

An older man stopped by my table. He would tell me about an organization for the mentally disabled that he worked with many years ago. He talked about a friend of his, who would get mad if anyone called the kids disabled, he instead, referred to them as “God’s Chosen Children”. It was a sweet thought but I had trouble wrapping my brain around that statement. I wouldn’t wish this on anyone.

As the party went on, I would watch Adam out of corner of my eye, as I attended to Dear Son, and talked to other people. This was no kind of life for a child I thought. No kind of life. This was not living, hooked up to a ventilator, unable to move anything but your fingers and your eyes. What kind of life did this child have? What kind of life would he have ten years from now, when he was much bigger and his mother could no longer lift him? She already looked exhausted and hadn’t sat still in her chair for more than five minutes at a time, constantly jumping up to adjust his tubing or to suction him.

All of this would bring me back to the conversation with the Physician only a few weeks ago. A simple question regarding the ventilator led to a discussion on DNR. He made his case asking me if Dear Son was suffering. I said yes. How could I not think that he was suffering when night after night, he would choke on his saliva? I would lie there and listen, as if I were a mother, listening to her child being beaten. He was trying to convince me that a DNR would be appropriate, if a child was suffering. He went on to explain that many physicians at Big Academic Medical Center were against DNR and were pro life, a position I couldn’t really argue with, being a pro lifer myself. He was challenging my beliefs, not in a bad way, but opening my eyes to a different point of view. He asked me to make the same decisions for Dear Son that I would make for myself. I drew the line quickly since that was not a decision I could ever make. I explained to him that if Dear Son were gone and I learned I had cancer, and it was curable with chemo and radiation, that I would not take any action. I explained to him that I have spent too much time in hospitals and that I never wanted to go through any of this medical stuff again. He continued on and was all set to write the letter, saying that he would write Ped Neuro Doc and tell him, when I stopped him and told him I needed more time. I am certain he knew it would never occur since he started the conversation saying that our “mothering” style is set in our child’s first year of life. I don’t think I could be a good mother, if I chose anything but life for my child.

But the argument reared it’s ugly head today with this boy. I saw the suffering. I didn’t think it was right. I didn’t think it was worth it. I mean, what kind of life did this boy have? It was beyond the fact that he wasn’t physically able to do anything. Here was a boy who clearly understood things, and yet, was trapped in his own body. The day went on and no one stopped to talk to him, at least, anything more than a greeting or two. He sat there, as if cemented in his chair, immobile and unable to communicate with anyone. This was some holiday party for him, I thought. My mind quickly wandered and the voice in my head grew louder, “who gets to choose, who gets to choose what’s right for this child?” The children’s choir started and they began to sing. I thought back to the statement from the old man’s friend, that these were God’s chosen ones. Then I got it, I finally got it…that’s who gets to choose.

But what happens when he makes the decision and we don’t listen, and we continue to pull out all of the stops to make him live? Perhaps that’s were the suffering comes in. We get greedy and don’t know when to stop, kind of like the show Deal or No Deal. We know when the contestants should stop, take home the money, but instead, they go on and play, always looking for a better deal, and getting burned in the end. But in the game of life, it’s not always so easy, especially when it’s God’s chosen ones. Deal or No Deal, that’s the question. I wish I knew. But if I were to look in my own son’s eyes, I know what would be true, is that I would always wish for, “one more day with you”. I love you Dear Son.


Fat Doctor said...

It's different for kids. But today I had a conversation with a 90-yo man who is on dialysis, has about 5% EF and his toes are rotting off. His adoring daughter was there, too. We again discussed code status and daughter again said full code. Pt just nodded in agreement, but I can tell he doesn't mean it. A code would be so cruel to this man who has lived a full life. But if that's what they want...

Becca said...

I'd just like, very gently, to offer a bit of counter-perspective to you, Dream Mom.

Maybe Adam wasn't feeling well that day? Maybe he was bored? Maybe he was cross because he wanted to be playing with his brothers and sisters and instead had been brought to this party? Perhaps he was sulking because he didn't get his favourite yoghurt for breakfast? It's no wonder he wasn't in a social mood if so few people were taking the time to talk to him - hopefully he gets a little more interaction in his everyday life.

What kind of things children experience shouldn't really be connected to which parts of them move or work and which don't - certainly all the best things in my life have been things seen and heard, things I was part of or there for, not things I personally did with my hands.

Maybe Adam's getting a motorized wheelchair next year. Perhaps his home is already rigged up with hoists. For all we know, he is proficient with a communication aid or computer, but it just didn't come to the party for some reason.

I was wondering if you had looked into hoists and/or an aide at home for Dear Son at all - one of your recurring themes is your sadness at not being able to lift him easily any more and the things he misses out on because of that, but you've never mentioned any of the things people try to get round that problem.



Xquizitdazie said...

I don't know you. I read your posts and try to know you. But that is not possible. I do however believe that as a mother, a parent, a friend, your dear son couldn't ask for anyone better. You know what is right in your heart. And you are your son's voice. I think when the time comes you will know when it is time for him to go. The thing is we don't know what these children want. Maybe to them this is not suffering maybe it is life. Even though your son is not talking but when your thinking, "just one more day" maybe he is thinking that also. I also believe that the time will come when you know he is ready, and in your heart you will know that the time is right. God will lead you, your son will lead you.

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