We’ve been completely off meds for about 2 days now. Lisa has had a very bad headache since last night, it got worse this morning but according to her, it didn’t feel like a seizure, maybe closer to migraines. She had dry heaves four times between 9:00a and noon but nothing showed up on the EEG.
We met with her primary doctor here, Dr. Kotagal, at around 10a. We agreed that we should keep her here for further observation, since we’ve come this far, if we start again some other time, we might have to repeat the several day wean off of her meds. Basically, our attitude right now is “we’ve come this far, let’s keep going.”
During the afternoon, they attempted to induce seizure in a couple of ways. One was to have her hyperventilate, but this didn’t produce any results. Then, they tried flashing a strobe light at various speeds a few inches from her face but again, no results.
Lisa was very, very exhausted this morning, she slept on and off until after 11a.m. We woke her to talk with the doctors and nurses, plus she was up four times with those little interruptions I mentioned above, but she was very bleary-eyed and out of it for most of that time. When she woke around noon, she looked much, much better.
It’s 9p now and she’s doing World History homework.
After that and a little algebra, she can start on eclipse, the third book in the hot new Stephenie Meyer series.
Being back in the Cleveland Clinic, going through the tests, the consultation with the doctor, walking to the cafeteria all bring back memories. Last time around (2005), we were new to the whole thing. Now, we feel like regulars. We have at least two of the same nurses. Aside from the fact that it reminds us that we’ve been through this before, it’s a bit comforting.
The single thing that stands out most prominently to me is trying to explain Lisa’s condition. Every time I hear the question “When was her last seizure?” I hear “when was the last time she went into convulsions?”. I immediately feel that I have to tell the person her entire history: the crash, 2 weeks in coma, years of carrying around carrying that plastic bucket in case she threw up, then years of waking up in a panic and pleading “walk with me, I have to walk around” followed by the terrifying episode in the van – her first seizure – then three (four? – I should know that) episodes of status epilepticus.
Status is a life-threatening condition in which the seizure lasts more than the normal 5-10 minutes. I just looked it up on a medical site and the description says “5-10 or even 20 minutes”. We WISH! A typical episode saw her seizing for an hour-and-a-half while the doctors and nurses did everything they could. It’s scary to hear comments like “no, that can’t be right, we don’t give that much mediation to an adult…”
As usual, we’re very optimistic. Dr. Kotagal and the hospital staff are great to work with, Lisa feels completely safe here and we have a huge network of prayer and support around us.