Seizures
I have no creative title or eloquent way to describe this past weekend.
Wesley has always been at risk for having seizures. The damage to his brain from birth is so extensive, his brain doesn't have normal electrical activity. We've done 4 EEGs now of varying lengths which have all shown abnormal electrical activity but have not confirmed seizures. So he's been on and off seizure meds his whole life weighing the benefits of protecting against the possibility of seizures and the significant side effects of heavy duty neurological medications. For the last nine months we've had him on a very low dose of Onfi, a relatively new seizure med with fewer side effects than most. As we've had new appointments and started new therapies, when they ask if he has seizures, we all shrug our shoulders and say maybe. He had never had clear obvious seizures, but occasionally his arm would shake or twist weird or he would zone out for a few seconds making us always wary and never quite sure how to assess his seizure situation. That was until Friday.
Friday night as I was getting Wesley ready for bed and getting ready to give him his nightly medications, he had a seizure. It lasted about a minute, he was stiff, lip smacking, and completely zoned out. After he came out of it he threw up and fell soundly asleep in my arms. I was terrified. Scared that this was our new reality, disappointed that our hopes of him never actually having seizures were dashed, worried for what this implies for his future, and frustrated that Colby was out of town for this. But also, I was grateful. Grateful that I saw it and recognized it, grateful that I wasn't up in the mountains and Wes with my parents like was our original plan for the night, and grateful that the nurse at the hospital I spoke with seemed relatively unconcerned.
Saturday night my parents decided to come up and take us out to dinner. Wes was acting a little sedated on the way to the restaurant but nothing horribly abnormal. After we sat down and ordered our drinks, his cheek started convulsing, then his eye, and later his arms and legs. He was still coherent and seemed a little troubled but was trying to play and even smiled once through the shaking. We started timing knowing that if it didn't stop after 5 minutes, we needed to go to the ER. Well it didn't stop, rather it progressed to more of his body and more severe shaking. We frantically loaded him in the car and sped away to the hospital. After a seemingly endless drive, I carried his shaking body in to the ER and they started working to stop the seizure. Three medications and 30 minutes after we started timing, his body finally relaxed and he fell asleep. Eight hours later we were sent home with orders to double the amount of Onfi he was getting and a prescription for an emergency med in case he has another seizure lasting more than five minutes. So home we went, feeling scared, confused, traumatized, and completely unprepared to deal with this new reality.
After calling the hospital multiple times emphasizing our fear and confusion, a very sweet nurse answered many of my questions and we have an EEG scheduled for this afternoon and an appointment with his neurologist tomorrow.
There are a lot of things I would change about choices I made over the weekend in dealing with the situation but in the end, playing "what if" is so much more harmful than helpful. I am left in fear of the future, trying to remind myself that God is in control, loving, and all knowing, but still feeling a real need to control the situation myself. Wes has been sleeping in bed with me since we came home and I'm not sure how long it will be until I'll be ready to put him back in his room. I am scared of going very far away from the hospital and hate to think what would have happened if we still lived an hour away. But again, there are many things to be thankful for: they were able to stop the seizure, he kept breathing the entire time, we were close enough to get to the hospital quickly, my parents were with me, he shows no signs of further brain damage, he hasn't had another seizure since, and being on the seizure med for the last nine months very likely protecting him from this happening sooner. So I would probably rank this weekend in the top two most terrifying and traumatic times in my life (along with Wes' birth), but we made it through.
Onward and upward.
Home resting with mommy. 
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