Sunday, May 22, 2011
Vagus Nerve Stimulator
Ben's neurologist thinks that the next step for Ben will be to implant a vagus nerve stimulator (VNS). It makes me so so sad to think of having to subject Ben to this kind of surgery. If we choose to go ahead with it, they will implant a generator the size of a watch under his left clavicle (according to other parents, this will be visible below his skin). They make another incision in his neck by the left vagus nerve and guide leads up through the skin to wrap around that nerve. They can program the device to send electrical signals at varying frequencies. I've heard from other parents that these devices often malfunction (and then are even left in), can cause headaches, coughing, and vocal cord damage, among other things. These decisions are incredibly hard to make for Ben. Of course I want to do what's best for him - while putting aside my own fears and sadness. But even in my most steadfast times, I don't know what is best for him. I think that holds true for decisions that people have to make in a lot of different areas of life. It's just that, in Ben's case, the stakes are so high. Do we go ahead with this surgical procedure and its risks, or do we accept that Ben has seizures every day? It would be a whole new world for us and for Ben if were allowed to live without daily seizures. Maybe it's worth the risks? Oh what to do?
Sunday, May 15, 2011
Beauty
Today, I told Chloe she was beautiful. And she said, "Mom, you're beautiful too." And she was looking at my face. Then she said, "But you have some scratches here" and pointed to my forehead, and to my most prominent wrinkle between my eyes.
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