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mapsedgeLast Friday was probably one of the worst days of our life with kids. Michelle's update was accurate and factual, and left out all the squishy stuff...my reaction, in other words. I haven't written about it...needed to put some space between that day and me.
It should be noted before we go on that the boy is doing much better. The ITP responded to the treatment, his platelet count more than doubled overnight, and there's hope that we're done with this round of Jami's Amazing Medical Mysteries.
Onward.
As she said, Jami reacted badly to the treatment. In no more than sixty seconds after the injection, I watched him swell and redden and his pulse jump to close to 200bpm. They hit him with benedryl, then hyrdocortisone, then benedryl again before pulse and respiration and skin tone finally came under control. He finally stabilized after an hour and a half, but not before a episode of the shakes that skirted the edge of convulsions, or so it seemed at the time.
The part that was hardest was that no one ever said, "Your child is not going to die from this." When I visited websites looking for information on ITP, none of them said, "Yes, it can be bad, even deadly, you're right to be concerned and watchful. But most kids grow out of it."
While Michelle made the necessary update phone calls to family and friends, I held my son, feeling his body shake and tremble, and him unresponsive (deeply asleep, as it turns out). Stroking his hair with my lips and chin, repeating "That's my boy...that's my good boy..." in the way that I do when I want to calm him (it usually works, even when he's hyper), and crying, trying not to make a spectacle of myself. My throat was locked around the idea that if I just said it enough times, it would fix him. I could hardly get the words out, and am near to weeping just typing it.
"Your child is not going to die." That would have made all the difference to me.
It should be noted before we go on that the boy is doing much better. The ITP responded to the treatment, his platelet count more than doubled overnight, and there's hope that we're done with this round of Jami's Amazing Medical Mysteries.
Onward.
As she said, Jami reacted badly to the treatment. In no more than sixty seconds after the injection, I watched him swell and redden and his pulse jump to close to 200bpm. They hit him with benedryl, then hyrdocortisone, then benedryl again before pulse and respiration and skin tone finally came under control. He finally stabilized after an hour and a half, but not before a episode of the shakes that skirted the edge of convulsions, or so it seemed at the time.
The part that was hardest was that no one ever said, "Your child is not going to die from this." When I visited websites looking for information on ITP, none of them said, "Yes, it can be bad, even deadly, you're right to be concerned and watchful. But most kids grow out of it."
While Michelle made the necessary update phone calls to family and friends, I held my son, feeling his body shake and tremble, and him unresponsive (deeply asleep, as it turns out). Stroking his hair with my lips and chin, repeating "That's my boy...that's my good boy..." in the way that I do when I want to calm him (it usually works, even when he's hyper), and crying, trying not to make a spectacle of myself. My throat was locked around the idea that if I just said it enough times, it would fix him. I could hardly get the words out, and am near to weeping just typing it.
"Your child is not going to die." That would have made all the difference to me.
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Date: 2006-08-29 17:29 (UTC)My friend, sometimes that's all you can do. We don't, any of us, have any real assurances that we'll be around beyond the next five minutes or so. I know that doesn't help really, but all we can each do is put as much into every moment that we have and hope it'll be enough.
I had the strong feeling of assurance, and still do, that he's going to be just fine. That doesn't equate to a "your child is not going to die" but it's the best I have to offer...that and a shoulder whenever you need it.