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.
Today, we crossed the one week mark.
There is no significant medical news, so I thought I’d post some hospital survival tactics. This might be helpful to anyone who has an extended stay like this.
- Find out the range of your roaming freedom and walk around. Lisa’s not confined to bed or the ward, but can walk down to the fishtank and the activities room. This is good not only for breaking the boredom, but for keeping you at least somewhat active.
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- Don’t count on the television. Unless you’re really, really an avid TV watcher, it will get boring eventually. Lisa brought New Moon (the follow-up book to Twilight) and finished all of its 547 pages 2 days ago. She would have finished it earlier but we did go through the Mork and Mindy marathon and the Spiderman DVDs. Which leads to…
- Bring some favorite DVDs. The Cleveland Clinic (and no doubt a lot of hospitals) has a DVD player and a lot of DVDs to choose from in the activities room, but it’s nice to have some favorites along. Comforting to watch favorites.
- Play games. They keep you thinking and active. Lisa’s made about $12,460,000 playing “Who Want To Be a Millionaire” with dad. Dad’s made about $27.50. She’s also killer at Sorry. Until I manually restacked the deck, she had 4 episodes of “dad got Sorry and sent Lisa’s piece home, then Lisa’s very next card was also Sorry and she put her piece back”.
- Make sure you fill out your meal selection menu. Find some favorite foods. I know, I know, but the food here has really been pretty good.
I’ll solicit some more from Lisa but she’s asleep so I’m going to leave her alone.
Saturday and we’re still here.
Lisa’s been stepped down off of all of her medications. Talking with the doctors and the ward nurses, it isn’t uncommon for this to happen. A child is brought to the ward, hooked up to all of the equipment and … the waiting begins. She’s had a couple of dizzy spells, some hand trembling, and some stomach activity reminscent of the very early seizures but nothing useful that could be captured on the EEG.
The most nerve-wracking thing about this is that she has a tendency to go into status very quickly so we were hoping to capture the information we needed while she still had some drugs in her system. Lowering her doses feels a little like playing Russian Roulette.
The other problem is that sitting around with no symptoms gets your hopes up. “Wow, maybe she’s been miraculously cured while we weren’t looking.” But this doesn’t really happen, not after this many years.
So, the waiting continues. Lisa’s now been through a Mork and Mindy marathon, a Bob Newhart Show marathon, is caught up on all of her homework, and has watched nearly all of the DVDs she brought, including all 3 Spiderman movies. We should have packed more movies. It’s like the Gilligan’s Island folks – they thought they were going on a 3 hour tour…