At home for a rest

In the beginning, we felt so powerless by Pepper’s clusters. We would wait until she had two seizures within an hour of each other and then head over to the hospital emergency department in a panic. Those days were frightening. We would end up spending three or four days in the hospital, watching powerlessly as she went through the torture of being poked and prodded for a vein (her chubbiness makes it next to impossible for the nurses and lab techs to find  a vein). Inevitably, she would be hooked up to an IV line so that easy access for a meds push was available. For days we would camp out in the hospital, sleeping on floors, rocking chairs, and the like. She would seize, oxygen would be administered, a new med would be introduced, her vitals would be taken, and nothing would change. Those were the early days of seizure clusters. 

These days when our Peanut has a cluster of seizures, we stay home with her and immediately call Sick Kids Hospital to speak with her neurology team. Really, the only treatment she will be getting at this point is a medication adjustment. This medication adjustment can be done over the phone. Isn’t technology grand? * Note sarcasm. By simply calling a number, I can be transferred to a highly educated, skilled neurologist, who can… what? What can he/she do? They can read her file, consult with colleagues and fax over a new prescription to our pharmacist. Reassuring, isn’t it? This is just one of the frustrations we feel as parents of a child with a seizure disorder. 

So here is the update: This weekend, Pepper suffered another cluster of seizures. We stayed home all weekend. A call to our neurology team got us a new dose of her third medication. We had to wait until Monday morning to have this filled because hospital administration only works Monday to Friday 9-5. Really? Really???? Yes, really. Our seizure count is now at a robust 113. Though she has not had a seizure in almost 20 hours, we know, it’s just a matter of hours, or possibly days. Could be one, could be two, could be a cluster. The countdown is on. For now, we are home for a rest.