Well we jumped, and just as I'd suspected, a parachute would have been nice. We finished weaning the Keppra last Sunday. By Tuesday he began having strange movements that were eventually identified as seizures. They obviously weren't as dangerous as the first one, but they did warrant another trip to St. Louis Children's hospital via fixed-wing airplane. However, this second time around was decidedly different from the first.
The first time we left I had tunnel vision. I was petrified, uncertain, shaky, confused, and pretty much on the brink of total meltdown. This time I was a little more in control, partly because Easton's situation seemed far less dire and partly because I was involved in the decision making process. While we were waiting for the transport team to arrive Easton was yelling at everyone who came into the room, pulling the iv pole over, and eating a popsicle. This was a decidedly different scenario than his first trip. We arrived at Children's safely and were taken to our room. We had a roommate, and that can be interesting when you're trying to share a room and sleep with two babies and two families. However, it was very nice to talk to someone who had some idea of where I'd been. Our stories are very different, but the look in her eyes was oddly comforting. We both live in a world of parenting that, thankfully, most parents will never experience.
At first we felt like the trip had actually given us a few more "answers" to our never-ending questions. But, like all things associated with this roller coaster, we had some unexpected discoveries as well. We were told initially that the little jerking movements that our son had been making all day long, every day for the past 6 months were just "myoclonic jerks" and that they weren't harming him. Hopefully he would grow out of them eventually, and we'd forget they even happened. Then, while taking two of our other children to the doctor for a persistent cough, I received a call from the neurologist saying that upon further review of the EEG, they had come to a general consensus that the movements were, in fact, seizures. I immediately felt that knot in the pit of my stomach. The fear that sort of bubbles up all the way from the bottoms of your feet was returning full force. My mind began racing with scattered thoughts and possibilities. If you could have seen my thought process it would have looked something like this:
Ok, so if they are seizures and he's been having them every day all day long for 6 months, how could I have missed it? What have we been neglecting to do for him? Is he gonna need more medication? Will I let them snow his brain again for something that doesn't seem to be doing irreparable damage? Why has he been progressing so much physically and cognitively if these are seizures? Do the docs really know or is this another guess? What will I tell Jeff? This will kill him. I don't want to be the one to cause that look of pain on his face. Maybe I won't tell him. No, I have to tell him. He's my partner, my teammate, my strength when I can't stand anymore. He has to know.
I actually probably missed some of the conversation with the doctor because these initial thoughts were kind of taking up all of the room in my brain. I did tell Jeff eventually, and I had been right about his reaction. He was also furious and confused, but mostly just hurt and I've seen that look on his face too many times in the past year. I knew he wasn't mad at me, or at Easton, just at the whole stupid situation. I also knew that nothing I could say would change how he felt at the moment, so I just picked up my baby, sat in the rocker with him and read an alphabet book. I just let the tears roll silently down my face. Now the jerking movements I felt as I held him meant something new and I couldn't deal with the pain that brought. So, I just "ignored" them and finished the book. I realized that our life is kind of like when you learn to go to the basement during a tornado or a bad storm. You know that it's what you're supposed to do, but the truth is that the basement doesn't have any magical powers. It doesn't guarantee that once you get there you are undoubtedly safe from any possible harm. It's just your best option. That's all the security any of us have. My family is just a little more aware of that now.
Since then I've had time to clear my head and to think about my next move. I could have stayed angry, but I don't have time to waste on being mad about something that I can't change. I had to rally my support system, and remember that he's still here in this moment and that is something. I've begun to look at alternatives to treatment for him that include dietary changes, homeopathic remedies, and pretty much anything else I can get my hands on at the moment. I may not be able to change any part of the situation, and I even know that I cannot "save" him. But, I will sure as hell die trying.