After several months of uncontrolled seizures, today we have a big multi-disciplinary meeting at the hospital. It was organised at the request of Miss Z’s neurologist, who I suspect may be running low on ideas about how to get Miss Z back to a better level of seizure control.
She requested that Miss Z’s palliative care doctor attend the meeting as well. Intellectually, I know that palliative care has a different meaning for children and that she probably wants him there to be part of the conversation on quality of life versus seizure control – but I couldn’t help but feel a bit unsettled.
Miss Z’s paediatrician will also attend, as she is responsible for managing Z’s overall medical care. And probably also someone from the nursing team that helps me manage Miss Z’s care, appointments, medications and resources at the hospital.
It isn’t often that you get more than one of Z’s doctors in a room at the same time, so I’m taking this meeting seriously. I spent the morning on data entry – putting all of Z’s most recent seizures into my seizure log spreadsheet. Since the raw data is a bit overwhelming to look at, I’ve also created several graphs and charts to help illustrate how things have been going.
I’ve printed out several copies, so that I’ll have enough to provide hand-outs at the meeting.
I have also written a list of questions I want to ask and topics I’d like to raise.
I’m also taking videos of several of Miss Z’s seizures, because it is much easier to show than describe what they look like.
Oh, and I have confirmed the room where the meeting is taking place and texted QB the location, so that we’ll all arrive at the right place.
Of course, things never go as smoothly as they should. Our car suddenly needed an emergency service, so I’m going to have to collect Miss Z from school, travel to the hospital and then home again using Uber and wheelchair accessible taxis. In the rain.
Preparation is everything.