Lisa has decided to go ahead and have the brain surgery we have been looking into. We don’t have dates scheduled yet but she has talked with another girl who had it and she is now excited about getting it done.
Dad and mom are both excited and nervous. It’s the right thing to do, but it’s scary.
We will keep folks posted so they know how it’s going and how it turns out.
Lisa and family returned home from Cleveland Clinic Saturday night.
We checked out of the hospital Friday afternoon but spent Friday night in Cleveland to kind of ease the transition from 2 weeks in hospital back to the ‘real’ world. And so we could visit the house they used for the outdoor shots of “A Christmas Story”. The house is in Cleveland and we’re huge fans of the movie from way back.
We took it slow Sunday, Lisa attended her cousin Andrew’s birthday party then back to Ann Arbor for rehearsal and Youth Group. Rehearsal is for next Sunday’s Christmas play at the downtown church.
So far, everything is looking good and we’re ramping back up for school tomorrow.
Thursday evening, week 2. Lisa went back on Trileptal last night, tapering upward to a full dose of 900mg this morning. The idea at this point is to…go home!
Yep. Given that we haven’t seen any seizure activity, we’re going to try dropping her medication down to just this one and get her back into her normal environment.
This falls squarely in the ‘double-edged sword’ territory. We’re very optimistic that she’s stabilized but like I said earlier, with her history, this feels very much like Russian Roulette.
And, there’s no easy or obvious way to talk about what we’re looking at. Miracle? Honeymoon period? Another morph in her symptoms (the first 5 years were mostly auras that affected her stomach and emotions)? If it’s a morph, when is the next one going to come? If it’s a miracle cure, why didn’t we at least get a letter from an angel giving us the ‘all clear’?
We’re easing our way into excitement – at least I am. I figure I’ll do the worrying and Lisa can enjoy the freedom. Whatever is happening, she’s about to enter a phase of her life in whch she’ll be much, much less medicated.
I’m expecting my posts in her will happen less regularly, at least posts related to Lisa’s health. We’ll see. Maybe I can get the Music section up and going. We’ll see.
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…
Happy Thanksgiving! Thanksgiving day and we’re still at the Cleveland Clinic.
Wednesday afternoon, we got to see some of Lisa’s MRI. There is some swelling in locations we didn’t know about but it seems pretty certain that 1) her speech and memory are localized on the left side of the brain and 2) the seizures are originating from the right side. These are good signs in terms of whether or not surgery would be effective.
But, we haven’t had any luck getting seizure readings. Today, we agreed to reduce her anti-seizure drugs. She’s currently on four different meds: Lamictal, Keppra, Topamax and Trileptal. Tonight, we’ll take her off of the Lamictal then tomorrow morning, we’ll drop Topamax.
Some of the things we’re thankful for:
- church family
- enough food
- our crazy dog
- fangfish (redfang triggerfish)
- board games