Isn’t it funny how one moment, one phone call, one conversation can completely rock your world, send you spinning into this alter universe where everything seems uncertain and nothing makes sense? I’ve been doing this for three years now with Harper, and you would think that by now I wouldn’t get shaken quite so easily. I mean, at some point, it gets easier and you get used to the unknowns, right?
Honestly, I don’t know. Maybe it does, and I’m just weaker than most. Or maybe it does, but we just aren’t there yet. Or maybe it just doesn’t… Doesn’t get easier, doesn’t get less scary, doesn’t get more predictable, doesn’t become less painful. Maybe I’m a little bit like Charlie Brown who keeps going back to kick that football with hopes of a different outcome, only to find myself on the ground once more.
The past 24 hours have been draining. After our hospital trip Monday, I spent the day yesterday tied to my phone, emailing and calling doctors and pharmacists to get everyone on the same page. That may sound like a small feat, but it seriously took all day, and the final result was to increase Harper’s medication once again. Based on the medicine levels in her blood tests, the doctor thinks that Harper is metabolizing her medication at a faster rate than most children. More daily meds wasn’t really what I wanted to hear- and I’ll admit that I broke down and had a moment once we got it all straight- but at least it was an answer.
With that, I just kind of accepted that this is normal procedure and not a major thing, just a need to tweak meds again. But then the neurologist from Duke called me for a more personal chat this morning, and gave us a big ol’ reality check. After lots of questions and note taking, he proceeded to tell me that what we are seeing is not good… That these big seizures are coming too frequently, that they are very dangerous for Harper, that they shouldn’t be lasting as long as they do… That there is most likely a lot more seizure activity that we aren’t noticing… That he’s surprised (but encouraged) that we haven’t started seeing evidence of delay or brain damage yet. It was a bit of a sucker punch to the gut, another moment that sent me reeling.
That being said, we are making some changes. He wants us to give this new dosage a shot, but her next seizure will land us an extended stay at Duke- he said about a week for them to do extensive EEG studying to determine what’s going on and what course of action to take. He was also concerned that we may not be able to wait until the fall to have our annual MRI with the neurosurgeon, but for now we wait. In addition to the increased meds at home, we are changing our plan of action a bit- if she is seizing and it is more than a focal seizure, no more waiting five minutes to administer the Diastat. It will be done right away, and we are to be sure we stay in close contact with him personally from here on out.
A lot to swallow, a lot to process, and a lot to pray about- but not a lot for God to handle. He’s still got this. Even tonight as my mind was tired and I felt pressed, He reminded me of His presence, of His hand on her as she giggled and danced and enjoyed life. Yes, one moment can change everything, but each moment is a gift.