In August we came up against the toughest part of her seizures to date. That’s when her seizure clusters just got completely out of control. Before that we had a good thing going really. While the “seizure days” were tough they came about once a week, and they started to feel manageable. We didn’t have any more of the Big Blue type. She’d have a cluster of ten or so. Some were so small they could go unnoticed by someone right next to her. We had a safety medication to give her that seemed to hold off the seizures for awhile.
Then August 8th came (which was, coincidentally, my 30th birthday). Since the new semester was rapidly approaching I was trying out my new schedule to see if we all (mostly me) could handle knowing that Ez would seize while I was at school–and her nurse would handle it. Before this I would never stay away from home if she had more than one seizure. Now I knew I needed to get comfortable with this reality in order to return to teaching and completing my dissertation.
And I knew that I would have to adjust to the new life soon. So when I got the third text from her nurse announcing a seizure, I asked the nurse to give the emergency drug and I gave myself a pep-talk: “Hillary, chill the hell out. Ezzy is in the capable hands of an RN. The RN is not nervous. You should not be either. Enjoy lunch at Panera. Go shopping with your mom. Relax. It’s your birthday.”
After the text announcing her sixth seizure I find myself diving out of the Macy’s changing room half dressed–trying to find my mother–mumbling “fucking experiment over, ok?” to myself.
As I drive up the hill toward home I get another text from Ezzy’s nurse. And I can feel the panic coming through in the spaces between the text. Ezzy had stopped breathing during a seizure. She needed to be stimulated to breathe. It was a Big Blue.
Honestly, I knew at that point that I could not return to work. I knew as I flew into the kitchen– pausing on my bee-line to Ez only to carefully close the door, so as not wake my sleeping girl–that I could not be away from her in these moments. I knew as I lifted her into my arms that this was where I belonged: With my girl. You see, the sad truth is that in such a moment there is nothing much to do. At the time we had no oxygen, no diastat…and 911 is not going to be able to get there in time to help. But if she were going to have these moments, she needed to be in the arms of someone who loves her…come what may.
We took her to the hospital soon after. She had a perfectly timed seizure that got us to skip the line at the emergency department…and we hung at our local hospital for a few days while they monitored her. I’m not going to talk about that visit except to say that she continued to seize every few hours for a couple of days. We were discharged with oxygen at our request, so that we could better respond to a big blue at home.
A week later we find ourselves driving out to Boston because her seizures started clustering again very quickly and showed no signs of letting up. Our doctor there had prescribed dilantin again, since it worked so well in Montreal. But this time, while it stopped the seizures, it made her stay awake whimpering and twitchy for 48 hours. So off we go to Boston where we are set up to be admitted through their ED into the epilepsy monitoring unit.
In the unit we get hooked up to EEG. Then we wait: one, two, three days..no seizure activity. Ezzy seems great. She laughs, she plays, she tries to sit up…she does not seize.
And the old conversations start back up. Slowly: “We know she has had seizures. The video you showed us is on your iPhone is definitely a seizure. But maybe what happened this week was not seizure.” Then: “We have reviewed your old videos from the last EEG, these events really don’t show up on EEG. We really don’t think that’s a seizure.” And “Yes, while there are some people who have seizures that do not appear on EEG, it is highly unlikely.”
We become so resistant that the resident invites me into the lab to review the old video (in which we caught a very brief seizure) with him. He asks: “Did the seizures you saw this week look like the ones we caught here? Yes?…They aren’t seizures. She isn’t even desating; we’d hear the alarms if she was” I say: “So the one on my iPhone is a seizure, but this isn’t? They are the same thing!”
He says: “I am telling you that they are not seizures. You should be happy.”
I said: “I don’t want it to be seizures. But I am positive that it what it is. We are not leaving until you telling my why my child is turning blue and shaking” and I left the lab…I went back to snuggle my baby and am fairly certain the video EEG caught me mumbling about the doctors
Within hours of this conversation she had one. And since they insisted that she didn’t desat on the last one, I read out her saturation as it plummeted to 60% (no alarm by the way, because it happened so fast!). It was another little one. On rounds they said it was “suspicious” but that the pattern they picked up might have resulted from the way I was holding her. They wanted me to put her down on the bed and not touch her next time.
A few hours later I was able to comply.
The next morning in walked the attending. The second seizure showed the same pattern: confirming seizure. He introduced us to the doctor he came in with, announcing that he had brought us a “Super Star” to help. Our new Neurogenetic Epileptologist (actually we get two–for the price of one) had a plan: a med change, some testing, etc.
But most importantly we finally felt like we could relax. We had proven beyond a shadow of a doubt that what we knew to be true: Our daughter has seizures. And we were in the most capable hands we could possibly imagine. It wasn’t that she promised us answers–quite the opposite, in fact–it was that we knew (and know) that she will leave no stone unturned.