Botox was the worst thing I've ever seen happen to my kid!
So, we went for Gus’s first round of Botox yesterday. (Don’t know why and how Botox benefits kids with CP? Article, though 10 years old, is still relevant, click here.)
Somehow I thought because we applied a numbing topical cream and left it on for over an hour, because we brought some really fun and exciting distractions for Gus, and because we had Child Life come in and be involved, that there would only be minimal pain and we could keep him from thinking about it while it was happening. THIS WAS NOT THE CASE!
First they laid him on his belly and he doesn't have much good control from there. Then the doctor used her weight to kind of sit on his butt while a nurse restrained his legs. Then they used the needles to do about 8-12 injections from his hips to his calves.
I was laying on my belly next to Gus managing the distractions so I didn't watch the procedure. With the first needle insertion he fussed and said, “Ow, ow, OW!” Then the burning must have started because his whole body went rigid. He yelled for Mommy and asked for it to stop. When it didn't and the needles and burning kept coming he just sobbed and I mean body wracking sobs and when he’d catch his breath he’d yell, “MOMMY!” over and over. These were the worst moments of my life and haven’t stopped haunting me since yesterday.
When they were finally done with the injections and I sat up so I could scoop him up, I was horrified at how much blood there was. Okay, it wasn't a ton but probably quarter sized smears around the sites on the last leg they did.
Maria was on the other end and watched the procedure. Her comments were:
“I didn't know they went so deep with those needles!”
“I wanted to vomit.”
The doctor said that the big kids tell her it burns for a few seconds and then it doesn't hurt again. Gus did seem to bounce back quite well and we pampered him the rest of the day. He got to go see the new baby giraffe at the zoo, he picked the restaurant for dinner (Bob Evans), and he got ice cream for a treat, etc. Maria and I avoided discussing our horrors in front of him but when I put him to bed that night and left the room he cried and wanted me to come back. Going in to talk to him, he opened up the topic with, “The doctor hurt my legs!” So we talked about it and I did the best I could to try to tell him that even though it was awful and it hurt, we are hoping it will really benefit him and help him move and feel better for a while. And I told him I was sorry, though sorry doesn't seem to begin to cover it.
Interestingly, he asked me the name of the doctor and even how to spell her name. She is most certainly on his hit list!
Kidding aside, this has really got me thinking about the psychological impact of this sort of experience. How terrible must it be as a child who trusts you to witness his mommies allowing this to happen to him? This is a kid who fake coughs and says he needs to go to the doctor to “feel him better”. How will this change his perception of doctors? Will he believe us anymore when we tell him things?
I feel terrible and that I should have, at the very least, prepared him better. I didn't tell him it was going to hurt so much or talk enough about why and what we were doing.
Perhaps the worst part is that I’m weighing in my mind what would make it worth it to do it again. Really?! Is there ANYTHING worth putting him through that experience again? Where is this coming from? Are we so desperate for him to walk someday that we would trade his innocence and trust for it?
So, this afternoon when I pulled his chair back from his table he actually placed both of his feet up on the table’s ledge. I gasped and showed Maria. We were told not to expect to see any results from the Botox for a week or two and here, 24 hours later, he’s done something that’s never been possible for him before. He could maybe do that with his right leg, though I don’t believe I've ever seen it happen but his left leg doesn't seem to have much voluntary movement at all so no way that’s ever happened. And, though I hate myself for it, I find myself thinking, “If we get this in 24 hours, what else might happen? Where is that phone number to schedule his next round of Botox?”