We are now in the ‘sit and wait’ portion of the visit. We all remember this from last time. The first few days, there is a lot of activity. You’re busy with discussions, hooking up the EEG, tests and scans, finding the vein for her IV, and settling into the room. There’s the sense that you’re accomplishing sometime – you are on the edge of the investigation that will lead to the diagnosis, then the treatment. It’s not quite Christmas morning, but there’s definitely a feeling of anticipation and optimism.
Then, the waiting starts.
All day today, Lisa has been laying in bed or sitting in the armchair, watching videotapes, working on her stories, even breaking up the monotony by taking long walks to the big aquarium, the Game Room or the Ronald McDonald lounge. But still, it’s just plain dull, sitting and waiting for something to happen.
The way this works is that she is connected to the EEG all the time. She has a button she can press when she feels an aura, which, in her case, typically precedes a seizure. When the button is pressed, a fleet of nurses come into the room to assess her and the monitor marks the recording so the doctors can go back and see what was happening in the minutes before, during, and after she pressed the button.
She’s pushed the button several times today. Three or four times, it was followed by throwing up, several more times (later in the day), it was accompanied by panic feelings and fluttering stomach.
This is beginning to look like the old days – Kindergarten through Middle School – when her symptoms were alternately throwing up and panic attacks. Maybe the brain is changing again? Or maybe this is something else. We don’t know. So, we wait.
There is nothing we can do to speed things up, to move them along. Her seizures don’t happen on demand, they’re not like clockwork. We can’t do anything but try to be patient. I wonder if this is what it was like being an expecting father back before we were allowed in the delivery room. Pacing back and forth, wondering how things were going “in there”, watching the door, waiting for any word. Probably not exactly, though. At least with childbirth, you know something is going to happen. With seizures, we could be here for days or weeks and leave with nothing.
And as the waiting goes on, the uncertainty builds. Will she seize at all? Has she outgrown the seizures and we just don’t know it yet? Do we even have a problem to deal with? Maybe this is all psychological? The frustration leads to second guessing ourselves and to doubts.
At times, it feels to me like we’re dealing with some feelings of failure or even guilt – as though she should be producing something and isn’t. As though we’re wasting these peoples’ time. As though we aren’t sick enough to be here.
It’s reassuring to hear the stories of other kids who come in for monitoring and don’t get the results. There’s a young man down the hall who was doing push ups in his room in an effort to stress his body and force a seizure. It’s not working. The nurses brought in strobe lights for Lisa to try and produce something. It didn’t work. We’re keeping her awake until 3 every morning, then waking her up at 7 or 8 hoping that the fatigue would help push her into a seizure. Nothing.
The frustration makes us want to just get out of here. We want to just get out of here, to go home and get on with our “normal” lives.
The thing is, Lisa’s life isn’t normal. “Normal” kids don’t have blackouts and hallucinations. That isn’t what “normal” is. We have to keep this in focus. And that’s the beauty of the system here. Jean and I got way for about 45 minutes to the cafeteria and talked about it. Where are we? What’s going on? And the thing is we just plain don’t know. This is a pre-surgical evaluation, this is a fact-finding mission. We came in prepared for surgery and ready to make the best of it. Maybe she won’t need it. Maybe we’ll find out that something has changed and she isn’t a candidate for surgery. Maybe…maybe anything. We don’t know and we can’t know right now.
So, we’re trying hard to just trust the process. There is a team of brilliant and experienced people gathering information from the EEG, from the PET and MRI and Spects, from talking with us, from listening to us. And they’re going to get together with us and discuss what’s the best plan of action.
Plus, there are a lot of people praying for us and sending other positive energy, love and support our way. We’ve got the wishes and prayers of a lot of good people with us, and we’ve got a daughter who has an incredible amount of faith in a God who is going to help her get through whatever this trip turns out to be.
You can’t ask for more than that.