Friday, July 30, 2010

In Which Things Continue To Go Downhill

Connor had three seizures today.  I am seriously not liking this trend.

This morning Connor's neurologist had us drastically up the Tegretol, in response to the seizures from earlier in the week.  He had the first one today at about a quarter after one in the afternoon-- an hour and fifteen minutes after his first dose of the elevated med.  It was about thirty seconds long.

The second came around three in the afternoon; I had ducked out of the house to run some errands and left Connor with our very competent respite care worker, who called me as I was picking up some munchies at the grocery store to let me know he was seizing.  I deposited my half-full shopping basket into the hands of a startled clerk with a hurried excuse and dashed out of the store to jump in the car and head home, liberally cursing every red light.  Joanna called me when I was about half-way there to let me know it was over and I didn't have to rush.  This one ended up being about two minutes long. 

The third one was around six in the evening; about ten minutes after Connor's last dose of meds.  Jeremy and Connor were lying on our bed singing a song in preparation for Connor's bedtime when Connor suddenly stopped responding.  This one lasted about two minutes as well.

We didn't hear back from the neurologist tonight, so hopefully we'll hear something tomorrow.  I have the number to page the neurologist on-call for the weekend, so if he has any more tomorrow (which is unfortunately extremely likely) we'll be calling it in again and with any luck we'll be able to get a quick game plan.  It's a catch-22 sort of situation; it may be that Connor's new seizure medication is actually triggering the seizures rather than helping (in the two weeks before the med change Connor had two seizures, and in the two weeks after the med change he's had eight), but sudden withdrawal from Tegretol is extremely likely to cause-- you guessed it-- seizures.  And that's even with starting a new seizure medication at the same time.  Then again, it may just be that the medication is ineffective or isn't a high enough dose. 

So I'm not sure what needs to happen, but whatever it is, it needs to happen soon.

Connor is, obviously, exhausted and extremely crabby.  I'm quickly getting that way; there are only so many major adrenaline highs you can have in one day before you start becoming kind of burned out.  Tomorrow we have respite care and Jake is also coming over to work on the deck, so there'll be four of us here, which will be nice because there will be plenty of people if we end up with an emergency.  The last time Connor had this many seizures in one day was back in January when he went status.  While I'm really, really hoping that's not what we have to look forward to tomorrow, given his past history I'm pretty worried that's where we're going to end up.

Though I may spend a good portion of tomorrow napping instead of helping with the deck, as I'm anticipating about a four-in-the-morning wake-up time for Connor.  Since he always sleeps for a while after having a seizure, he napped for seven hours today.  I'm happy to report that I spent none of that time doing housework and a substantial portion of it eating Ben and Jerry's straight out of the carton, as well as some rather delectable brownies.  I'm sure you are all glad to know I have my priorities straight.

Keep us in your thoughts and prayers, folks.  We could sure use them over here.

~Jess

18 comments:

Anonymous said...

Lots of prayers coming from the Alamia's. I am back in Washington if you ever need anything.

-Kathryn

Mary said...

Gaaahhh Jessie. I'll be thinking about you and the little guy most of the day, I'm sure. If you need someone to talk to, I'm actually off work for once tomorrow, so give me a jingle. Wugaboo.

Niksmom said...

Keeping you all in my prayers/

krlr said...

Keeping you & the boy in my thoughts...

Julia O'C said...

Oh, my God. I'm so sorry. Please keep us posted on what happens next. Sean and I are thinking about you guys.

Julia O'C said...

I forgot to mention: In addition to prayer, my Dad (who is an Episcopal priest) highly recommends Ben & Jerry's during times of great stress. I'm not joking.

*sigh* I really hope today is a better day.

xraevision said...

Oh Jess, I am so sorry to hear about Connor having three seizures in one day. So scary, and exhausting for you too. Keeping you in my thoughts. Stay strong!

Bronx Cataldo's said...

Here's hoping that today will be a better day

Kristin said...

I hope the neurologist calls you today, and that you don't need any emergency trained personnel today.

Wherever HE Leads We'll Go said...

Jess, I am so sorry! I am praying, praying, praying! These seizures are getting out of control! Hoping today is a much better day for you.

Herding Grasshoppers said...

Praying for you, too. My heart just breaks every time he has another one.

Julie

Our Pages said...

I have placed you guys on our prayer list at church. We are praying for you guys as well!!! I am so sorry to hear how things are going for Connor and you and Jeremy. We love you guys!!!

leah said...

Oh, goodness. I am praying for Connor and both of you, so that these seizures get under control!

Jennifer Jayhawk said...

Prayers for your family!

I'm extremely worried because you post everyday. Hope everything is ok.

Alisa said...

Oh my goodness! I am praying for you all. Here is to hoping today is uneventful and the Ben and Jerrys is plentiful. I will be checking throughout the day. Keep your chin up! xoxo

Colleen said...

I will be praying for Connor, that he gets a break from the seizure monster.

Katy said...

I hate to read this. Prayers for you all and good for you with the ice cream. If anyone needed some ice cream today, it was you.

Julia said...

I'm so sorry, Jess. I wish from the bottom of my heart that these seizures would just stop for good, and you and Connor could get back to your theme boxes and digging up sand, and be free of the terrible anxiety and stress that this is causing you.

 
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