happy being trevy

Yesterday started with a long seizure which left Trevor on the couch for most of the morning. 

He's started perking up a bit by mid morning. We were able to do a little math, reading, and writing with relative success. At his suggestion we even walked up to the local corner store for his daily dose of sunshine. 

After his daily rest hour he was attacked with another seizure, longer and stronger than the first.

It often seems like he's not breathing during his complex partials, but this was the first time his lips turned blue. It was just Bristel and I at home. To say we were terrified would be an understatement. I keep a pulse ox in our emergency backpack, which I'd grabbed. The pulse ox revealed that his oxygen was quite low, reading between 60-70 for a minute. His heart rate was erratic. His lips pinked back up, but his oxygen stayed in the 80s for quite awhile after his seizure.

I've suspected for quite awhile that he's experiencing respiratory distress during his longer seizures. Almost immediately afterwards he'll complain of intense headache pain, a sign of oxygen loss. His blue lips are the first time my internal fears correlated with the data.

Bristel had the insight to grab the photos above. The timer in the foreground, is frozen at the time we'd paused as the seizure ended. In the first image, Trevor is in the background, postictal and sleeping while I'm in another room on the phone with the neurologist's office. In the second he'd climbed into my arms seeking comfort from his headache and saying he didn't understand why he felt so poorly. These images are incredibly raw and emotional. Her heart is set on being a doctor, particularly a neurologist so that she can make a difference in the lives of families like our own. I see these images and think she'd also make an amazing photo journalist specializing in advocacy for medically complex families.