View from the Floor, and Beyond
Posted Sep 12, 2010 9:16pm
Sunday, September 12, 2010
Welcome to the wonderful world of Phil’s healing! Yesterday was indeed my View from the Floor, and I now know that my shelf life in the hospital is approximately one major surgery and 4 days. Thanks be to Mark, who made sure that I ate, because without calories, I’m sure the time would have been reduced to half that. Without proper encouragement, hospital stays are one of the most effective weight loss plans ever!
I am beginning to understand the admonitions to take care of myself, get some rest, take some time for me, etc. At first, you hear that and it’s like, “Yeah, yeah….sure I will.” But your mind is not on you. And even though I’m old enough to know that I don’t bounce like I used to, I still have enough foolishness in me to believe I can handle anything at times. So you take on your mission as bedside warrior, ever at the ready, vigilant to be there and aware every moment!
However, as I maintain my daily post, my energy depletes. Every cry of pain, every mumble of discomfort, every necessary procedure, every two-hour repositioning takes something far more critical than a physical toll. Your stamina starts to dwindle. Your faculties start to unravel. Your emotions begin to act erratically. One minute you are crying, and the next you are angry, after five minutes of happiness, prior to which you felt nothing…nothing at all.
I have thought of this whole surgical affair in terms of a descent, into a place of the unknown, the unpredictable. The No Promises Zone, that has a different ending for every scenario. And like a roller coaster, the weeks prior to it were a slow, steady, creaking, clicking ascent. Time forces you to the top. You take a deep breath. The car gets to the top and all you can do is let go. That’s why some people hate roller coasters. They tense up, they brace, they fight it, they resist it. That’s why all the people who are smiling on coasters are the ones with their hands in the air! They have surrendered to the void!! Wheeeeee!!!! The rest of us arrive at the end of the ride with our hair askew, slack-jawed and buggy-eyed, and swearing we are far too old for this.
Tuesday: Surgery, a veritable coma. Wednesday: Waiting for the critical breathing to start and bleeding to stop. Thursday, Friday, Saturday…I’d honestly have to look back at what I’ve written to tell you what transpired each day. Each day has just been another piece to the puzzle of getting Phil’s little body back in the saddle. First the airway. Then the blood flow. Then keep the lungs clear. Then remove drains, and change bandages, and give him tube feeds and try to get him to eat and drink, then remove the arterial line, then an IV line, then change the dressing, slow down on the narcotics, find the right pain medication, (not too sleepy, not in too much pain….hmmmm) and get him up in the chair, even for a few minutes. Remove the catheter and figure out how he’s gonna get his business done without it. A week full of multiple visits from Orthopedics, ICU, Respiratory, Anesthesia, Surgery, Physical Therapy, Occupational Therapy, the Visiting Nurse Association, the Discharge Planners, the nurses, the aides, Social Services, Dietary, and some I am probably forgetting.
So yesterday was the day when I finally shut my eyes and let go. I don’t care anymore about trying to control the outcome here. I just want to survive this medical boot camp and get my little soldier home. Exhaustion took over. Thank goodness for visitors, which helped give me the incentive to clean up the room here, and pretend everything is all in order, when, in fact, all I can see is chaos. Like Dorothy staring out the window as her house gets taken by the violently surreal winds of Oz.
But today I am feeling like we have, in fact, landed. From the first visit of the rounding physicians, we established a bit of a plan. After they left, it started coming together for me in my mind, as it has been all along. You know when you can see enough of the puzzle in place so you no longer need the box top? Yeah…I think I can actually see order arising from the chaos. Meds every four hours. Ensure at a specific feed rate. Respiratory starts his day with the in/exsufflator and a good cough. Then the nurse will come in and watch US change the bandages. Then let him rest. Then get his bowels taken care of (won’t take you into the details there!). Rest. After more meds we’ll get him up into the chair, and try and keep him there for an hour, and maybe even take a stroll around the floor. And when he’s sleeping, I will try and catch a nap!
In looking back over the past week and putting it in perspective alongside my “wiped out” factor, I am trying to think of what I could have done differently to have conserved my energy. A night at home on my memory foam mattress sounds like bliss compared to the primitive accommodations of the pull-out couch. But which night? I slept through the 2 hour check of one night shift, and Phil saw the night nurse come in with a syringe and told her he did not need his pain meds…and woke up howling, way behind the pain-ball. Even sneaking out to the van for a cup of coffee and real cigarette was tough to schedule; usually when he was completely passed out, or when we had a visitor who could sit with him. And looking back, this is so radically different than say, the kids’ tonsillectomies or appendectomies, where it was easy to say, “Okay, Mom is going home for some rest…take good care of them, I will be back in the morning. Make them better, just like new, and we’ll see you later,” knowing they were in competent medical hands. In this case, we are finding the staff asking US so many things. “What settings do you use on the cough assist?” “How do you transfer him?” “Is he able to push the button on the PCA?” His underlying Duchenne changes so many of the details in patient care with variables that are just not in the chart. He’s decidedly not a candidate for “cookbook” medicine. Yeah, I’m biased, but he really IS special.
So, could I have done anything differently? I’m thinking of 10 minutes here, a half hour there, times I could have chosen to nap between “specialists”, whose schedules are iffy at best. The conclusion that I come to then is, no…it just is what it is. He needed me, and I was there. But the lesson here is for the future.
When your son is diagnosed with Duchenne, you end up going through a merry-go-round of the stages of grief with every new development (or deterioration as the case may be). Initial denial (“Hey, it’s not so bad…he’s still pretty much just like all the other kids, just a little slower”) gives way to anger (“Damn disease! Stinkin’ health care system! Crappy genetics! Argh!”) which gives way to depression (“Waaahhhh!”), to bargaining (“If we hold enough fundraisers for research, will a cure be granted?”), to the acceptance where we realize there is nothing that can be done to stop this monster. We realize this is a fixed fight. But we don’t have to let it take two of us in the long run. I will take with me from this place the knowledge that while my son has Duchenne…I do not. He will grow weaker…I do not have to. I cannot sacrifice my own health and well-being to this disease. Phil needs me, and one of the victories over this killer is that I will not let it take me, too. I’m making a little mental list of all the things it can’t take if I don’t let it: My health, our laughter, our family, our faith, or our hope.
We spent a “lazy” Sunday here today. We took care of business, and napped. Phil is sitting in his chair as I type this, but quite ready to get back into bed. Still hurtin’, but it gets better every time. The last IV line came out tonight, and tomorrow we will talk about discharge. A little scary, but feeling like I’m starting to put all my thoughts in a row, ready to start integrating the parts of my reality that are not Phil back into my life.
Can’t close this out without an utterly inadequate “Thank You!” to everyone who has reached out to us at this time. To my mom and sisters who came and cleaned the house; to Savanna for taking the night watch while I slept; to my kids for stepping up to the plate, watching the store and the house in our absence, to everyone who visited and brought smiles to Phil’s face, to Jay for the frank discussions about living with the outcome of all of this and rallying the cyber troops, to Phil’s class at school who have been following his trip…the list could go on, but before this reads like an academy award speech, I think I will just go and grab some of the dinner Mark made up for me, give Phil a kiss goodnight for all of you, and look forward to tomorrow….
Welcome to the wonderful world of Phil’s healing! Yesterday was indeed my View from the Floor, and I now know that my shelf life in the hospital is approximately one major surgery and 4 days. Thanks be to Mark, who made sure that I ate, because without calories, I’m sure the time would have been reduced to half that. Without proper encouragement, hospital stays are one of the most effective weight loss plans ever!
I am beginning to understand the admonitions to take care of myself, get some rest, take some time for me, etc. At first, you hear that and it’s like, “Yeah, yeah….sure I will.” But your mind is not on you. And even though I’m old enough to know that I don’t bounce like I used to, I still have enough foolishness in me to believe I can handle anything at times. So you take on your mission as bedside warrior, ever at the ready, vigilant to be there and aware every moment!
However, as I maintain my daily post, my energy depletes. Every cry of pain, every mumble of discomfort, every necessary procedure, every two-hour repositioning takes something far more critical than a physical toll. Your stamina starts to dwindle. Your faculties start to unravel. Your emotions begin to act erratically. One minute you are crying, and the next you are angry, after five minutes of happiness, prior to which you felt nothing…nothing at all.
I have thought of this whole surgical affair in terms of a descent, into a place of the unknown, the unpredictable. The No Promises Zone, that has a different ending for every scenario. And like a roller coaster, the weeks prior to it were a slow, steady, creaking, clicking ascent. Time forces you to the top. You take a deep breath. The car gets to the top and all you can do is let go. That’s why some people hate roller coasters. They tense up, they brace, they fight it, they resist it. That’s why all the people who are smiling on coasters are the ones with their hands in the air! They have surrendered to the void!! Wheeeeee!!!! The rest of us arrive at the end of the ride with our hair askew, slack-jawed and buggy-eyed, and swearing we are far too old for this.
Tuesday: Surgery, a veritable coma. Wednesday: Waiting for the critical breathing to start and bleeding to stop. Thursday, Friday, Saturday…I’d honestly have to look back at what I’ve written to tell you what transpired each day. Each day has just been another piece to the puzzle of getting Phil’s little body back in the saddle. First the airway. Then the blood flow. Then keep the lungs clear. Then remove drains, and change bandages, and give him tube feeds and try to get him to eat and drink, then remove the arterial line, then an IV line, then change the dressing, slow down on the narcotics, find the right pain medication, (not too sleepy, not in too much pain….hmmmm) and get him up in the chair, even for a few minutes. Remove the catheter and figure out how he’s gonna get his business done without it. A week full of multiple visits from Orthopedics, ICU, Respiratory, Anesthesia, Surgery, Physical Therapy, Occupational Therapy, the Visiting Nurse Association, the Discharge Planners, the nurses, the aides, Social Services, Dietary, and some I am probably forgetting.
So yesterday was the day when I finally shut my eyes and let go. I don’t care anymore about trying to control the outcome here. I just want to survive this medical boot camp and get my little soldier home. Exhaustion took over. Thank goodness for visitors, which helped give me the incentive to clean up the room here, and pretend everything is all in order, when, in fact, all I can see is chaos. Like Dorothy staring out the window as her house gets taken by the violently surreal winds of Oz.
But today I am feeling like we have, in fact, landed. From the first visit of the rounding physicians, we established a bit of a plan. After they left, it started coming together for me in my mind, as it has been all along. You know when you can see enough of the puzzle in place so you no longer need the box top? Yeah…I think I can actually see order arising from the chaos. Meds every four hours. Ensure at a specific feed rate. Respiratory starts his day with the in/exsufflator and a good cough. Then the nurse will come in and watch US change the bandages. Then let him rest. Then get his bowels taken care of (won’t take you into the details there!). Rest. After more meds we’ll get him up into the chair, and try and keep him there for an hour, and maybe even take a stroll around the floor. And when he’s sleeping, I will try and catch a nap!
In looking back over the past week and putting it in perspective alongside my “wiped out” factor, I am trying to think of what I could have done differently to have conserved my energy. A night at home on my memory foam mattress sounds like bliss compared to the primitive accommodations of the pull-out couch. But which night? I slept through the 2 hour check of one night shift, and Phil saw the night nurse come in with a syringe and told her he did not need his pain meds…and woke up howling, way behind the pain-ball. Even sneaking out to the van for a cup of coffee and real cigarette was tough to schedule; usually when he was completely passed out, or when we had a visitor who could sit with him. And looking back, this is so radically different than say, the kids’ tonsillectomies or appendectomies, where it was easy to say, “Okay, Mom is going home for some rest…take good care of them, I will be back in the morning. Make them better, just like new, and we’ll see you later,” knowing they were in competent medical hands. In this case, we are finding the staff asking US so many things. “What settings do you use on the cough assist?” “How do you transfer him?” “Is he able to push the button on the PCA?” His underlying Duchenne changes so many of the details in patient care with variables that are just not in the chart. He’s decidedly not a candidate for “cookbook” medicine. Yeah, I’m biased, but he really IS special.
So, could I have done anything differently? I’m thinking of 10 minutes here, a half hour there, times I could have chosen to nap between “specialists”, whose schedules are iffy at best. The conclusion that I come to then is, no…it just is what it is. He needed me, and I was there. But the lesson here is for the future.
When your son is diagnosed with Duchenne, you end up going through a merry-go-round of the stages of grief with every new development (or deterioration as the case may be). Initial denial (“Hey, it’s not so bad…he’s still pretty much just like all the other kids, just a little slower”) gives way to anger (“Damn disease! Stinkin’ health care system! Crappy genetics! Argh!”) which gives way to depression (“Waaahhhh!”), to bargaining (“If we hold enough fundraisers for research, will a cure be granted?”), to the acceptance where we realize there is nothing that can be done to stop this monster. We realize this is a fixed fight. But we don’t have to let it take two of us in the long run. I will take with me from this place the knowledge that while my son has Duchenne…I do not. He will grow weaker…I do not have to. I cannot sacrifice my own health and well-being to this disease. Phil needs me, and one of the victories over this killer is that I will not let it take me, too. I’m making a little mental list of all the things it can’t take if I don’t let it: My health, our laughter, our family, our faith, or our hope.
We spent a “lazy” Sunday here today. We took care of business, and napped. Phil is sitting in his chair as I type this, but quite ready to get back into bed. Still hurtin’, but it gets better every time. The last IV line came out tonight, and tomorrow we will talk about discharge. A little scary, but feeling like I’m starting to put all my thoughts in a row, ready to start integrating the parts of my reality that are not Phil back into my life.
Can’t close this out without an utterly inadequate “Thank You!” to everyone who has reached out to us at this time. To my mom and sisters who came and cleaned the house; to Savanna for taking the night watch while I slept; to my kids for stepping up to the plate, watching the store and the house in our absence, to everyone who visited and brought smiles to Phil’s face, to Jay for the frank discussions about living with the outcome of all of this and rallying the cyber troops, to Phil’s class at school who have been following his trip…the list could go on, but before this reads like an academy award speech, I think I will just go and grab some of the dinner Mark made up for me, give Phil a kiss goodnight for all of you, and look forward to tomorrow….
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