Spencer has an appointment with her pediatric neurologist ever 2-3 months and we communicate in between visits, too. At the end of each appointment, we discuss Spencer’s seizure emergency plan. If it still seems workable, we leave it. If it needs tweaking, we work out a new plan. Regardless, I always walk away with a printed, updated copy of the plan. It’s fabulous. I keep one copy at home and another copy in our travel bag.

A couple of months ago, Spencer was at her dad’s house. She stays with him two nights per month. We have a system: if Spencer has a seizure during the night and it poses no immediate danger (meaning, if it’s less than five minutes, her breathing isn’t impacted, etc.) then he sends me a text. If she has another seizure, he calls me and I make decisions on how to proceed. One time, she was seizing again and again. I instructed him over the phone to give her the emergency rescue medication we use and I walked him through the process. But Spencer kept seizing, and then I was stumped. Thankfully, I have a printout of the seizure emergency plan! So I consulted it and I knew just how many more times she would seize and how many more doses of rescue med to give before calling 911 or taking her into the emergency room. I’m grateful to have it spelled out! I was also grateful that our doctor and I considered COVID-19 when we made the plan. He gave me lots of leeway to use multiple doses of rescue medication, which would hopefully ensure that I could handle it at home, lessoning the risk of going to the hospital during COVID-19.

(I had to drive to his apartment with additional doses of rescue medication at 3am, but whatever)

Someone recently asked me if I have a plan for if I test positive for COVID-19, and if it’s written down. No, and no! Ugh. My thinking is that I’ll just power through and take care of both myself and Spencer because I am her caregiver. I doubt she would go to her dad’s, because she would need to quarantine with me because we’re always together, thus would be exposed together. Her dad and my mom (who lives 10 hours away) are my backups if things go bad with me.