I've been dreading this day for weeks, since the very day I scheduled the appointment, in fact. Owen had his first EEG in 14 months today, at Swedish Medical Center in Seattle. The last one was in May 2008 when we realized, after two LONG series of injections of ACTH into his little legs each morning, for weeks on end, that his infantile spasms had returned for the third time. That last time, last May, we were in the hospital for a day, for a full 24 hour video EEG. I'd say that was the longest 24 hours of my life, but since Owen's birth, I've had a few of those experiences.
He didn't fall asleep during the hour-long monitoring today, so they weren't able to record the half dozen or so spasms we know he still has as he falls asleep. I had to laugh when I heard the reminder message they left on my phone the day before, suggesting we keep him from sleeping at least four hours prior to the EEG so that he would be tired and so they could record the brain activity during the transition to sleep. If I only had that much control over when Owen does and does not sleep. Ha.
I cried this morning. I didn't let anyone see this except the owner of the crepe shop in Kingston. We got in line for the ferry, the boys had just fallen asleep, and I told Kelsey I needed to get some coffee. I walked into the crepe shop and I just couldn't hold back the tears. I was weeping as she handed me my change and I mumbled something about a birth injury and seizures and an EGG today. She said, "It is so hard to be a mother." Yes.
So I got my double Americano and walked and cried and walked and cried until I saw that the ferry was about to dock. I got back into the car and felt both a sense of relief, feeling as though I could make it through the day, and and urgency to grab control of the car and steer us home, away from hospitals and wires and the smell of that sticky stuff they use to ultimately make Owen look like Frankenstein.
The EEG stirs up so many difficult memories of Owen when he was just a few days old, electrodes all over his head, his eyes shut, Kelsey and I wondering if he was ever going to "wake up." The first EEG, when Owen was just a little over 24 hours old, showed very little brain activity. I told the neurologist to give it to me straight. He said is didn't look good - at all. Then Owen had a second EEG a few days later which showed a very small amount of improvement, but still looked bleak. He had a third EEG a few days later. Same thing. The level of anxiety, the magnitude of stress, having to watch the test, wait for the results, see the red marks and adhesive where they attached the leads... it was almost too much. You think you can't go through another one and then you do, because what choice do you have? I was always so eager to wash his hair and get all that horrible, ugly, sticky, smelly, invasive stuff off of my baby. He was, after all, just a baby.
Today's EEG went just fine. In fact, it went great. It revealed no new seizure activity. Owen was a champ, even giving them a few flinches at the waist, a few arches, a little lift of the legs, body movements that have been suspect by some. "Oh, there was a jerk," the tech would say. "Mmmm, he's just trying to get up a bubble," I would say. "He just had his milk and the Ketocal is so hard to digest. It just sits in his stomach and makes gas bubbles." "He just raised his legs," they said. "It's not a seizure. He does that when... Never mind. I just know. I'm his mom." They laughed. Owen's neurologist told us in our meeting with him a couple of hours later that Owen's EEG looked good. No seizures. He said that the movements, flinching, etc that the tech noted were not seizures. "I know," I said.
Happy Early Birthday, Owen. May you be blessed with more of the "good stuff" in your third year of life.
