I've been banished from the kingdom. Banished by the Queen. My crime? Kathryn says I snore. How she figures this I do not know because I swear I never slept a wink last night. I think she's full of crap.
I think the real reason I'm sleeping at home tonight is that, after putting the twins to bed, Sharon showed up at the hospital with two bottles of toenail polish and a pair of fuzzy slippers and bribed Kathryn into giving me the boot.
Kathryn is still in the hospital. She's staying another night. She's still wired up, twenty-four copper electrodes cemented to her head with something that I swear smelled exactly like model airplane glue. It took an hour to put them all on and I guess the hospital is quite proud of them because they simply refuse to take them off and let her go home. Kathryn is also quite taken with them, and over the past two days she has wondered aloud multiple times whether there's a particular lobe of her brain that lights up each time she beats me at cards. Then she adds, almost as an afterthought, that the doctor will probably mention it if there is, because it's been lighting up a lot. Gin.
She's doing better, one hundred percent so, but her EEG reading is all over the place. The neurologist sat down with us and told us that Kathryn's brain was "unusually active," like anyone who had been in Kathryn's presence for more than thirty seconds couldn't have told her that. I am so not paying her bill. The preliminary readings are that Kathryn has Benign Rolandic Epilepsy, which if you know anything about epilepsy, you are probably relaxing now and if you don't know anything about epilepsy, then you can at least recognize the word "benign" and breathe a sigh of relief as well. Basically what I know from the crash course I've had over the last two days is that if you had to go to the epilepsy store and buy a kind of epilepsy for your kid, this one is the one you should get. Especially if you can get one that matches the drapes.
This was not Kathryn's first seizure, although I didn't remember the previous one until I was grilled by the doctor in the ER yesterday. It happened in the middle of the night just over a year ago, my wife woke up to the sound of Kathryn grunting and thrashing. It lasted about half a minute and, to be honest, it was one of those cases that, by the light of the next morning, seemed almost imagined. Maybe, we reasoned, it had just been a particularly bad nightmare. We followed up with our pediatrician, and both the doctor and my wife and I had a that-sure-was-strange-let's-see-if-it-happens-again attitude that rendered the whole episode forgotten by the end of the week. And let me tell you, it would be harder to feel more stupid than I did yesterday, facing an emergency room doctor and telling her that, you know, just now when I said that Kathryn had no history of seizures? Oh silly me!
So on we go. More readings and more tests are scheduled for tomorrow. I'll write when I know more.
I looked up Benign Rolandic Epilepsy and it doesn't sound too bad. Hugs to your family from mine. We are thinking about you.
Posted by: Joy | October 15, 2007 at 12:23 AM
I recently went through this with my two year old, when we thought he had meningitis. Turned out he was having combined febrile seizures due to low electrolytes and high fever. All I know is that was the longest night of my life, and the smallest I've ever seen him. I didn't know a human could live through as much fear as I had that night.
But, he is fully recovered and more rascally than ever, and Kathryn will be the same! There is so much love, prayers, and concern coming her way... she is so loved by so many people all over the world! Please keep us posted, The Dad. I feel like you all are extended family!
Posted by: keric125 | October 15, 2007 at 12:59 AM
It's good to
hearread you sounding like yourself again... things sure are looking up(ish).Give my love to Kathryn, and hang in there.
Posted by: Shiri | October 15, 2007 at 02:32 AM
I'm glad you're getting some sleep tonight. I can't really imagine what it's like being you, and I'm truly grateful for the window you open up for me to see into your life. Everybody loves Kathryn - I hope all the best.
Posted by: Sandra | October 15, 2007 at 02:57 AM
I'm glad she is okay.
Posted by: Veronica | October 15, 2007 at 03:40 AM
You're coming out of the other side of some scary days and that is very cool.
Take care, all of you.
Jason
Posted by: Jason | October 15, 2007 at 03:48 AM
Brian & Sharon - my thoughts are with you all. I spent all day yesterday at St. Joe's with a friend who probably did not make it through the night (am just waiting for the call) and it sucks.
That being said, it is a million times worse when it is your own child (been there done that with mine).
I am so glad to read that it is not as tragic as it could have been.
Posted by: Anne Prince | October 15, 2007 at 07:32 AM
So GLAD to read this. Keep updating (and keep winning, Kathryn).
Posted by: J | October 15, 2007 at 07:55 AM
Ditto Shiri - It's great to read you sounding like yourself again. That means things are on their way to back to normal. Kathryn is fantastic, but of course you knew that. You're the one constantly telling all of us that. Thanks for sharing your family with us, the good and the not so good. That way when the not so good happens, you can see just how much good you put out into the world by making us laugh so much. And knowing we appreciate it. And that we would so much love to do something to help when the going gets a little tougher. You make my day every day when I read your blog. Lots of love and good vibes to you and Sharon and Kathryn and the twins.
Posted by: Laura | October 15, 2007 at 07:57 AM
The fear of the unknown is so scary. It's good to know what you are facing and what to expect if it ever happens again. Glad to know she is back to normal. Continued prayers to you guys.
Posted by: debbeeanne | October 15, 2007 at 08:06 AM
I agree with PPs - these things are so much scarier when you don't know what you're facing. Tell Kathryn to quit being so darn SMART - her brain's working too hard :)
Both our youngest daughter and my nephew had seizures as babies - Kristin's were febrile, Elliott's are still unknown and they've stopped. There's not a whole lot scarier than seeing your child limp and unresponsive!
I hope this chapter is closed soon for your family and she can go back to beating you at Gin in privacy!
Posted by: loren | October 15, 2007 at 08:38 AM
Praying for you all!
Please keep us posted - we care!
Posted by: Krys72599 | October 15, 2007 at 08:41 AM
Thanks so much for taking the time to update us. I hope you won't find it too stalker-ish when I say I actually dreamed about the three of you last night.
Hope you can get some sleep and get ready for more Gin punishment.
Posted by: Nicole | October 15, 2007 at 08:49 AM
So glad to hear that Kathryn is beating you in gin! And don't feel bad about not remembering/recognizing the previous seizure. My daughter sleepwalks and has night terrors, and I wouldn't know a seizure like you described if I saw it. Thanks for the update, and know that I am still praying fervently for you guys down here in Texas - both for health for Kathryn and peace for you and Sharon (and the grandparents, too!).
Posted by: mommy24x7 | October 15, 2007 at 08:53 AM
It sounds like another night in the hospital is necessary even though it doesn't feel good at the time. You want to make sure that they *know* what is wrong with her and how to approach it. A little extra time now may save having to go back later.
Positive thoughts and continued prayers for all of you, but especially for Kathryn.
R/
Posted by: Rebecca F. | October 15, 2007 at 08:55 AM
This is the first time reading your site. I am so sorry to hear what you are going through. My son has epilepsy and a severe form. I live close to you. If you need any support or information feel free to email me. I hope you are not at St. Joe's hospital. I had bad experience with them in the beginning of our epilepsy journey. I do recommend St. Barnabas. Be cautious of which meds are given. Some can make the seizures worse. I have been on this journey for almost 5 years with my son so I speak from our experience. I wish your daughter and family all the best. Like I said feel free to email me. BTW, our neuro is at Children's Hospital of Philadelphia (only b/c his is rare/severe but she is the best)
Jennifer
Posted by: Jennifer | October 15, 2007 at 09:03 AM
Terrifying. Yet after a Google search, it sounds like you're right, it's the "good" epilepsy.
I hope this is just a minor disruption in your lives and becomes nothing more than a story for the family record books.
Posted by: Amy the Mom | October 15, 2007 at 09:22 AM
Amazing how kids (and you) can make us cry in worry and then in joy--and then crack us up on top of it all. Sounds like Kathryn's back to her normal self, that's WONDERFUL.
Keep up the great card playing, Kathryn. As for you, The Dad, maybe you should teach her Crazy 8s instead. Up the ante: Loser gives a pedicure to the winner. ;-)
Posted by: Diane | October 15, 2007 at 09:33 AM
Just yesterday, I asked my mother why nobody ever told me that as a parent I would spend so much time with my heart in my throat with worry. She said that it was too hard to explain to someone who's never experienced it. How right she is. I'm so glad that Kathryn is back to her usual eye-rolly self. And thanks so much for sharing your family's happenings the way that you do. It's good for us all.
Posted by: Sue | October 15, 2007 at 10:14 AM
Still thinking of you all while you learn about this new path. Hugs, smiles and laughter to Kathryn.
Posted by: Finn | October 15, 2007 at 10:31 AM
Thinking of you all & sending good wishes to the five of you 'over the wires'. We haven't met but your blog always hits home. We are the 'praying-type' so know you are in our prayers.
Posted by: sara | October 15, 2007 at 10:56 AM
That's some scary s--t. I can imagine what the last 48 hours have been like. Thank god there's a light at the end of the tunnel.
Hug them all for me.
Posted by: Bryan | October 15, 2007 at 11:05 AM
I am a little bit late with this but I am sooo glad that Kathryn is doing better. I can't imagine how scary it must have been. Keep us posted
Posted by: Mia | October 15, 2007 at 11:13 AM
Sending hopeful vibrations from Austin, and please tell Kathryn not to scare us like that. Your previous post sent me right back to the day when I watched my infant son sliding unconcious into a giant MRI machine which would determine whether there was indeed Something Wrong With His Brain. He was so tiny I thought the weight of the air might crush him. His brain is fine now though I'm not sure mine ever came all the way back.
Posted by: Jennie | October 15, 2007 at 11:15 AM
Hang in there, we had a series of "episodes" the Drs could not figure out that was seizure like activity, with Flu symptoms, after getting Rotavirus (nasty stuff)! He caught it from a Lincoln Nebraska hotel coming back to Colorado after spending Christmas in the Midwest. We did spinal tap and MRI thing that came back negative; it still slays me to this day, they call it negative when it comes back good! That was three years ago and we have been episode free ever since.
Hang in there, it may be outgrown, at least ask about it!
Posted by: MileHiDad | October 15, 2007 at 11:19 AM