The Trigeminal Stimulator, or as we refer to it The Gemmy, has done nicely in UCLA's trials and is now available in Europe with a script, thanks to Dr. D. In the US, new trials are starting at Cornell and NYU (our hospital) in the next six months. If Ces wants to continue receiving Gemmy support, we can easily transfer to NYU. No more rationalizing trips to California. Bad news. (Though, stay tuned for illicit trips to Colorado to smuggle Charlotte's Web out of Colorado Springs coming this summer).
Dr. D and I had a long, frankly circuitous, conversation weighing Cesare's need for autonomy and constant supervision. We talked, as we have in the past, about SUDEP, a conversation I find maddening. How does one have a rational conversation about how to stare sudden death right in the eye? We talk about it like it is a side effect. Dr. D has a simple risk assessment scale for SUDEP. It ranges from 1 to 5. Cesare is a three. A three. So, anything short of sitting up nights and staring down at Ces while he sleeps seems foolish, really. "Research says that the risk of death decreases significantly when there is a parent in the room", he says. But we both agree that I've got to get out of Ces' room, he needs privacy- normalcy. Infrared night camera monitoring, wrist watch seizure alert system, baby monitor, wireless pulse oximeter. I can string the kid up so that if he so much as rolls over I can leap out of bed and race to his room. "I'll be psychotic from sleep loss within a matter of weeks", I reason. "Hmmm" he says.
Why is no one talking about this? We come back to the illusive T word again: Transition. Ces isn't a child anymore. How do we make the leap? Close my eyes, plug my nose and jump.
Dr. D and I had a long, frankly circuitous, conversation weighing Cesare's need for autonomy and constant supervision. We talked, as we have in the past, about SUDEP, a conversation I find maddening. How does one have a rational conversation about how to stare sudden death right in the eye? We talk about it like it is a side effect. Dr. D has a simple risk assessment scale for SUDEP. It ranges from 1 to 5. Cesare is a three. A three. So, anything short of sitting up nights and staring down at Ces while he sleeps seems foolish, really. "Research says that the risk of death decreases significantly when there is a parent in the room", he says. But we both agree that I've got to get out of Ces' room, he needs privacy- normalcy. Infrared night camera monitoring, wrist watch seizure alert system, baby monitor, wireless pulse oximeter. I can string the kid up so that if he so much as rolls over I can leap out of bed and race to his room. "I'll be psychotic from sleep loss within a matter of weeks", I reason. "Hmmm" he says.
Why is no one talking about this? We come back to the illusive T word again: Transition. Ces isn't a child anymore. How do we make the leap? Close my eyes, plug my nose and jump.
I feel for you; we are not quite at the transition stage, but I worry about SUDEP (multiple med regimen, daily seizures, etc. - my son is high risk). I have been able to compartmentalize a bit - I don't truly believe there is anything I could do to prevent it. Even if I was there next to him every night, I honestly don't know if I could fight SUDEP. And the way that I see it is: his quality of life to him is just as important, or more important, than his quantity of life to me. It's scary, but I don't quite know how else to see it without going absolutely crazy.
ReplyDeleteJessica, that is a sound piece of wisdom. Thank you. I needed that.
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