The kid, in my estimation of late, has been pretty damn happy. We've gone down—then immediately back up—on one of his seizure meds in a fit of indecision. Last night we reduced a different one, the one that has never shown any obvious efficacy, so why keep him on it?
It feels good to wallow in Calvin's good mood and impish grin, in his giggles and hugs, in his relative seizure-free stint of twenty days. But tomorrow morning I dread. We must take him to the hospital in Portland, leaving the house before seven, arriving for an eight o'clock appointment to get a nasal-gastric tube thread through his nose and into his gut without anesthesia and on an empty stomach. He's getting a pH probe to see, once and for all, if he has been suffering reflux.
I remember when Calvin was only a few weeks old, having to witness a similar procedure every few days while in the hospital. He was being partly nourished with my pumped breast milk through a nasal-gastric tube, since his weak little suck couldn't get enough on its own. Kathy, a nurse with neonatal intensive care unit experience, performed the task as I watched intently to see how she measured and marked the tube for proper insertion. One day, Kathy wasn't at work and the g-tube needed changing. Another, less experienced nurse showed up to do the job. I helped her restrain Calvin, who was just shy of six pounds, while she measured and marked the tube. I'd seen that she'd done it differently than Kathy, and as she thread it through Calvin's tiny nostril he began to gag and scream and tremble. "You're putting it in too far!" I cried, strands of tears and snot streaming from my face onto Calvin. "You measured it wrong!" and the nurse removed the tube as Calvin sputtered, shrieked and turned bright red.
Later, Kathy came in on her day off to replace the tube correctly. She did so for the remainder of the time that we stayed in the hospital until we took Calvin home when he was seven weeks old and had finally mastered the art of nursing. We'll never forget Kathy for her kindness and compassion.
So, I dread tomorrow morning. But perhaps Calvin will pass with flying colors like he did during the anesthesia for his MRI, for his necessary circumcision at the age of two and for his eye surgery when he was five. Perhaps he will impress us with his resilience like he did for the countless, scary, unpleasant, protracted EEG lead applications and removals, his painful and frequent blood draws and IVs with their needles and splints and the restraint needed for all. Perhaps Calvin will quickly forget about the tube taped to his cheek that goes up his nose and down the back of his throat that he'll have to endure for 24 hours, and maybe he'll manage, like my kid sometimes does, to be a damn happy kid nevertheless.
It feels good to wallow in Calvin's good mood and impish grin, in his giggles and hugs, in his relative seizure-free stint of twenty days. But tomorrow morning I dread. We must take him to the hospital in Portland, leaving the house before seven, arriving for an eight o'clock appointment to get a nasal-gastric tube thread through his nose and into his gut without anesthesia and on an empty stomach. He's getting a pH probe to see, once and for all, if he has been suffering reflux.
I remember when Calvin was only a few weeks old, having to witness a similar procedure every few days while in the hospital. He was being partly nourished with my pumped breast milk through a nasal-gastric tube, since his weak little suck couldn't get enough on its own. Kathy, a nurse with neonatal intensive care unit experience, performed the task as I watched intently to see how she measured and marked the tube for proper insertion. One day, Kathy wasn't at work and the g-tube needed changing. Another, less experienced nurse showed up to do the job. I helped her restrain Calvin, who was just shy of six pounds, while she measured and marked the tube. I'd seen that she'd done it differently than Kathy, and as she thread it through Calvin's tiny nostril he began to gag and scream and tremble. "You're putting it in too far!" I cried, strands of tears and snot streaming from my face onto Calvin. "You measured it wrong!" and the nurse removed the tube as Calvin sputtered, shrieked and turned bright red.
Later, Kathy came in on her day off to replace the tube correctly. She did so for the remainder of the time that we stayed in the hospital until we took Calvin home when he was seven weeks old and had finally mastered the art of nursing. We'll never forget Kathy for her kindness and compassion.
So, I dread tomorrow morning. But perhaps Calvin will pass with flying colors like he did during the anesthesia for his MRI, for his necessary circumcision at the age of two and for his eye surgery when he was five. Perhaps he will impress us with his resilience like he did for the countless, scary, unpleasant, protracted EEG lead applications and removals, his painful and frequent blood draws and IVs with their needles and splints and the restraint needed for all. Perhaps Calvin will quickly forget about the tube taped to his cheek that goes up his nose and down the back of his throat that he'll have to endure for 24 hours, and maybe he'll manage, like my kid sometimes does, to be a damn happy kid nevertheless.
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| Calvin with his nasal-gastric tube at 20 days old |
I will hope that he will. You know, what strikes me when I read this -- beyond the obvious horror and sympathy I feel for your situation -- is my own time in the early years of Sophie's babyhood when she, too, endured all manner of medical interventions (5 spinal taps in one four week period) and how that time traumatized me, perhaps, for ever. That's all. Your recounting of these things makes me feel a bit kinder toward myself --
ReplyDeletei think there is always room to be kinder to ourselves. xoxo
DeleteI sure do hope he will be as happy and as comfortable as he can be. When Bethany was finally starting to feel better from her brain cancer she got so mad about all her tubes and wires that she pulled out her feeding tube and even the tube that went from her brain into a bag! That was scary. Her spinal fluid was spilling out all over the place. Now we are facing her annual MRI next week and we are dreading it. She often gets very violent for medical procedures.
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