Unfortunately, I was right on the money about the marathon phone day. All I wanted to know today was when our Vigabatrin will be in and what we should do in the meanwhile. I started calling the minute the office opened this morning and was told by the woman who answered the phone that I would hear back from someone within an hour. When I hadn't heard back in THREE hours, I called again, only to be cut off by the person I was talking to so she could tell me that the nurse practitioner was getting ready to call me in a few minutes. When I hadn't heard back an HOUR after that, I called again, but the phones were turned off for lunch. Finally, at 2:00, someone answered the phone. As I explained my situation and my experience thus far with a mix of firmness and courtesy, she had the nerve to interrupt and tell me that they didn't usually give people a window in which to expect a call back. As though that excused the fact that no one followed through. I thought about asking her if that struck her as problematic in any way - that, when your child is having scary seizures, there is no way to get in touch with anyone who knows what they're talking about before 4:00 in the afternoon when the office closes; that office workers make promises, apparently unaware of any supposed office policies; that they have created a rock solid barrier of indifference to keep parents in need from physicians who can help. Instead, I took a deep breath and said that I wanted to speak to someone right away.
I was put through to one of Dr. Awesome's colleagues, who was supremely unhelpful. He basically told me to go back up on the prednisone and call back next week. When I tried to get information about the Vigabatrin, he claimed that he just couldn't give me an answer and that hopefully they would have some information for me next week. I explained that we had completed all the paperwork two weeks ago and asked who I could talk to who would know the answer, but he would not be moved.
So, I called Kyle. At this point, we became the Supremely Effective Kratzsch Good Cop Bad Cop Team. Kyle built on my dogged good cop nagging and slammed them with his scary voice and grown-up tone. I hate to say it, guys, but I think it also had to do with him being a man. I think these people are used to giving moms the run around. Within half an hour, I got a call from the physician's assistant updating me on the situation and how she was fast tracking it. Five minutes later, the nurse practitioner called and said that if I could come down and sign one more form, she would walk it over to the hospital herself to finish it up and fax it in. I threw Collin in the car, and fifteen minutes later, the Vigabatrin paperwork was done and submitted. We should hear something by Monday. In the meanwhile, we will stop the wean, slightly increase his dose, and just watch to see how he does.
Collin is fine, other than being a grouch face from the prednisone wean. He was extremely sleepy all morning from the seizures, but had some happy time this afternoon. These days are a lot harder on us than him, I think.