Well, we had our shortest trip to the emergency department to date with Harper this evening… Definitely counting that as a blessing! She was down for a pre-dinner siesta, and we found her at about 5:45 in the bed having a major seizure. She had been in bed for about an hour, so unfortunately we have no idea how long she was actually seizing. By the time we got to her, her muscles were rigid down the side of her body and starting to convulse, her heart rate was elevated, her jaws were clenched, and she was starting to vomit- all indicators that she had been seizing for a while.
We were able to administer her emergency medication at home before the paramedics arrived, so the seizure was slowing down by the time we loaded the ambulance and she was passed out in her heavy Valium-induced sleep by the time we got checked into the hospital. Based on the frequency of our visits lately and the fact that she was stable, we were able to skip IVs and blood tests and all of that and just get monitored for a few hours. Then they let us take her back home to be under our watch overnight, and encouraged us to speak with her neurologist about her medication.
So that’s where we are now… Watching her like a hawk and sending messages to Duke. Our appointment up there isn’t until the end of May, and this has been our third ER visit in a month, so I’m starting to feel a bit anxious. There are so many questions running through my mind- Is this medicine not a good fit? Is this just a new pattern or way of life for Harper? Are there even more seizures that we just aren’t noticing? Are these long seizures going to cause long term damage? Are we missing triggers? How safe are all of these medications and scans for her little body?
So many questions without answers. So many wonderings about the future if I dare let my mind wander there. But if I’ve learned anything at all through this journey, it’s this- one moment at a time. Sometimes that’s a day at a time, and sometimes it’s just a minute at a time. I cannot dwell on what may or may not happen, or how this roadmap isn’t leading us in the direction I wanted. In order to preserve any ounce of sanity I may have, I must focus on the very next step… And making sure I take that step as I hold the hand of my Father.