If ever a picture could sum up a day, this is the one. Harper was discharged from the Duke PICU yesterday, and while it is a blessing to be in our own home, the challenges are not over just yet. She is miserable- her chest and tummy are red and splotchy from the leads for the monitors, her forehead has marks from the EEG leads, and her hair is tangled and full of glue (and we aren’t putting her through the task of trying to get that out yet!). She’s wobbly and unsteady on her feet, yet fiercely independent, so we’ve had lots of bumps and falls. And she screams, and screams, and screams, sometimes because we look at her, sometimes because she doesn’t get her way, but most of the time for reasons we cannot figure out.
For now we’re blaming all of this on the meds, and hopeful that it won’t be a long lasting effect of the seizure she had. We met with the neurology team before we came home, and they too are hoping this is just a medicine side effect that will resolve in the next week or so. They also took the time to really talk with us openly about Harper and answer questions we had.
That was a slightly difficult conversation. The doctor in charge apologized for seeming so pessimistic, but said that she wanted to be very real with us about the situation, and she was very frank with us. There are some real downsides to what we learned. They described Harper’s case as very complex. We knew already the physical complexities of her brain- Hydrocephalus, scar tissue, and cysts don’t make for normalcy. But her epilepsy is also complicated, not following a typical pattern or having an easy fix. When they can localize where seizures are happening, they can use specific medications or even surgery. But hers are random and unpredictable, so that really limits our options. And at this point, she’s getting close to having to consider a third daily medication, at which point medication starts becoming less effective. And, as the doctor pointed out, she is only four, so we have a long way to go still.
On the upside, Harper has done well developmentally thus far. We aren’t having as many huge seizures. She does at least have these “honeymoon” phases when they increase or add medications, so we do have good months. There are more experimental options that we can consider as we progress- diet and supplements and such, but with her issues, those are things that must be done under a doctor’s close supervision, and we’ll cross that bridge when we get to it. There is also more in-depth testing they can do through the epilepsy clinic there, but we have had enough excitement with testing for a nice, long time.
So for now, we wait. We take it one day at a time, sometimes an hour or a minute at a time- we have to. It is impossibly overwhelming to think ahead to her future when you process what the doctors have to say. But God has a bigger plan. We’ve heard the negative talk before. We were told she wouldn’t survive birth. We were told she may not make it through surgery, then it was questionable if she’d make it through the night. She may not eat, she may not talk, she may not walk… we’ve heard it all, we’ve known the risks, but we also trust the One who formed her and numbered her days. And I don’t know if y’all have figured this out yet, but this girl is a fighter, a warrior whose story God is authoring.
So, tonight, we get through the night, and we enjoy sleeping in our own bed. Then we will take on tomorrow, one fit at a time. We will count our blessings- such as she can carry on at home now without people watching her every move, and she still has that feisty, fighting spirit that’s carried her through so much. And we will continue to look to the One who holds all of our days in His hand.