Perspective
Every now and again, some experience comes along to remind me that I have it pretty good. That I'm lucky to be where I am. That there are those who are struggling with issues that go far beyond whatever I'm dealing with in my life. The last one occurred when I spent a week at the Betty Ford Center and got to hang out with the families of people that were fighting various addictions. I had the opportunity to see how addiction hurt families, destroyed relationships, destroyed lives.
More recently, I followed closely the medical care of a young man with sickle cell anemia. 'TJ' is a young teenager with the most severe form of sickle cell anemia. He was brought to the hospital for his latest flareup, termed a vaso-occlusive crisis (VOC). Some trigger causes the red blood cells to sickle, and these misshapen cells end up blocking up the vasculature, mostly in the long bones. This in turn can result in bone marrow infarction, causing severe pain. TJ is admitted to the Pediatric ward for pain that he rates an '8' on a scale of '10' in his arms, knees, and lower back. A number of things can causes these crises, among them dehydration or just cold weather. Many of these patients experience three to four hospitalizations per year on average. TJ has also come in with a little shortness of breath. While he's in the hospital, we'll also watch him closely in case he develops acute chest syndrome (ACS).
The first time I enter his room, TJ really doesn't interact much with me. I try asking him the standard medical workup questions, but don't get much out of him. Perhaps he's sick and tired of being in the hospital, and the last thing he wants is to answer the same damn questions from yet another person. Perhaps it's because he's in so much pain that any movement, whether it's turning his head to look at me, or breathing, causes him so much pain. Maybe it's because he's hooked up to a morphine drip and the painkiller is making him too groggy. I suspect it's a combination of all of these things. The only thing he manages to convey to me is that the hot packs on his legs have gone cold, and he needs a fresh batch. At least I'm able to do that for him.
Later, I try to ask him more about his illness. We like to ask the kids what they want to be when they grow up. Most of them say they want to be a doctor, which, of course, is the right answer when they're in the hospital. TJ can't articulate any dreams to me. He ends the interview abruptly, as he has to go to the bathroom. He's still in too much pain to get himself out of bed, so he grabs the hospital urine bottle. He's a pro, handling his business with amazing proficiency (if it were me, I'd probably get some in the bottle and most of the rest would end up on my bedsheets). I walk out of the room and take a couple of moments to think about TJ - 'sicklers' have a life expectancy of 42 years. What kind of dreams do you hold when you're not expected to make it much past middle age? I find it disconcerting that TJ has so much expertise at hospital life. He shouldn't be gifted in the nuances of life in the hospital, administering himself morphine 10 times an hour with the PCA. We shouldn't have to be giving him laxatives to counter some of the more embarrassing side effects of morphine. He should be out running around getting into trouble with his friends or on the basketball court practicing his free throws. He shouldn't be living life with constant 5 out of 10 pain. Every time he comes into the hospital he gets a chest x-ray to watch for development of ACS. It's astonishing to realize how much we've irradiated kids like this.
The truth is that he manages his disease better than anybody else. He lives in a single parent home, and there's been DSS involvement in the past for concerns of neglect. TJ is even able to correct the nurse when she forgets one of his many medications. All we can do for him is try to minimize his pain, keep him hydrated to prevent another VOC, and treat him for ACS when his latest chest x-ray comes back showing new infiltrates in his lungs. Eventually we have to try to wean him off the morphine. He understands that this has to be done if he's ever going to get home. His complacency with this plan frustrates me. Part of me wants him to yell at us, that we're not managing his pain well enough, that we're not doing a good enough job. But no - TJ remains his quiet, stoic self and never lashes out. I feel like I can't connect with him - sometimes I feel like I'm merely annoying him with my constant questions:
How's your pain? Are you short of breath? Were you able to eat? Were you able to go to the bathroom? Do you need any more hot packs?
But I did what I thought I could. On my last day on the Pediatric inpatient service, I walked into TJ's room to say farewell. I told him I hoped I'd never see him in the ward again, and he laughed. He shook my hand and said goodbye.
I suppose working with TJ made me appreciate more the fact that my life is full of choices. Sometimes I bemoan the petty little annoyances like being single, or having unfulfilling relationships with those close to me, or stressing out about climbing the academic ladder. But I can still choose to be content with my life in spite of these things. I've got years ahead of me to chase my dreams, and more than enough time to form new ones. That's something that not everyone has, and shame on me if I ever forget that.
More recently, I followed closely the medical care of a young man with sickle cell anemia. 'TJ' is a young teenager with the most severe form of sickle cell anemia. He was brought to the hospital for his latest flareup, termed a vaso-occlusive crisis (VOC). Some trigger causes the red blood cells to sickle, and these misshapen cells end up blocking up the vasculature, mostly in the long bones. This in turn can result in bone marrow infarction, causing severe pain. TJ is admitted to the Pediatric ward for pain that he rates an '8' on a scale of '10' in his arms, knees, and lower back. A number of things can causes these crises, among them dehydration or just cold weather. Many of these patients experience three to four hospitalizations per year on average. TJ has also come in with a little shortness of breath. While he's in the hospital, we'll also watch him closely in case he develops acute chest syndrome (ACS).
The first time I enter his room, TJ really doesn't interact much with me. I try asking him the standard medical workup questions, but don't get much out of him. Perhaps he's sick and tired of being in the hospital, and the last thing he wants is to answer the same damn questions from yet another person. Perhaps it's because he's in so much pain that any movement, whether it's turning his head to look at me, or breathing, causes him so much pain. Maybe it's because he's hooked up to a morphine drip and the painkiller is making him too groggy. I suspect it's a combination of all of these things. The only thing he manages to convey to me is that the hot packs on his legs have gone cold, and he needs a fresh batch. At least I'm able to do that for him.
Later, I try to ask him more about his illness. We like to ask the kids what they want to be when they grow up. Most of them say they want to be a doctor, which, of course, is the right answer when they're in the hospital. TJ can't articulate any dreams to me. He ends the interview abruptly, as he has to go to the bathroom. He's still in too much pain to get himself out of bed, so he grabs the hospital urine bottle. He's a pro, handling his business with amazing proficiency (if it were me, I'd probably get some in the bottle and most of the rest would end up on my bedsheets). I walk out of the room and take a couple of moments to think about TJ - 'sicklers' have a life expectancy of 42 years. What kind of dreams do you hold when you're not expected to make it much past middle age? I find it disconcerting that TJ has so much expertise at hospital life. He shouldn't be gifted in the nuances of life in the hospital, administering himself morphine 10 times an hour with the PCA. We shouldn't have to be giving him laxatives to counter some of the more embarrassing side effects of morphine. He should be out running around getting into trouble with his friends or on the basketball court practicing his free throws. He shouldn't be living life with constant 5 out of 10 pain. Every time he comes into the hospital he gets a chest x-ray to watch for development of ACS. It's astonishing to realize how much we've irradiated kids like this.
The truth is that he manages his disease better than anybody else. He lives in a single parent home, and there's been DSS involvement in the past for concerns of neglect. TJ is even able to correct the nurse when she forgets one of his many medications. All we can do for him is try to minimize his pain, keep him hydrated to prevent another VOC, and treat him for ACS when his latest chest x-ray comes back showing new infiltrates in his lungs. Eventually we have to try to wean him off the morphine. He understands that this has to be done if he's ever going to get home. His complacency with this plan frustrates me. Part of me wants him to yell at us, that we're not managing his pain well enough, that we're not doing a good enough job. But no - TJ remains his quiet, stoic self and never lashes out. I feel like I can't connect with him - sometimes I feel like I'm merely annoying him with my constant questions:
How's your pain? Are you short of breath? Were you able to eat? Were you able to go to the bathroom? Do you need any more hot packs?
But I did what I thought I could. On my last day on the Pediatric inpatient service, I walked into TJ's room to say farewell. I told him I hoped I'd never see him in the ward again, and he laughed. He shook my hand and said goodbye.
*******
I suppose working with TJ made me appreciate more the fact that my life is full of choices. Sometimes I bemoan the petty little annoyances like being single, or having unfulfilling relationships with those close to me, or stressing out about climbing the academic ladder. But I can still choose to be content with my life in spite of these things. I've got years ahead of me to chase my dreams, and more than enough time to form new ones. That's something that not everyone has, and shame on me if I ever forget that.
posted by Mikey at 11:40 PM
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