I have tried to write this update multiple times today, and multiple times words have failed me. This tiny hand in mine has been symbolic of so much today… grasping for help, hanging on for dear life, clinging to hope.
As we awoke here at Duke this morning, it was this little hand reaching for me that opened my eyes. And as my eyes opened, I knew something was wrong. I had sensed it coming all night as Harper was restless and kept waking and reaching for me, and it finally all culminated just after 6 a.m. She was most definitely seizing, so I hit the button for the EEG study and started monitoring her.
Within a minute there were nurses in the room with us, watching and preparing and calling for more help. It all went by quickly, and it didn’t take long to realize that Harper was in trouble. They gave the first dose of IV rescue meds and the seizing slowed enough for her to make eye contact with me and reach out for my hand, but then she was gone again.
There was a mad rush of events that seemed chaotic yet organized, and we ended up in the PICU (pediatric intensive care unit). Harper’s heart rate stayed high and she began to desat, so they were having to hold her head and neck to keep her airway clear and give her oxygen through the cannula with talk of possible intubation, and she ended up with three doses of the first rescue med and one dose of a second, stronger med before things began to calm down.
It has been a long, wearisome day as we are still in PICU. She was cleared to move back to a regular room this afternoon, but there’s no space, so we are here overnight. She is having a difficult time- obviously a seizure that lasts 30-40 minutes causes side effects, as does all of the medication. She is angry and has spent hours screaming. She hasn’t rested much or eaten much, isn’t able to walk yet, and while she is comprehending and talking, her speech is a little off still- she’s mixing up words and slurring a bit. But these are typical side effects, so we are optimistic that they will resolve with a little more time.
This big scare has basically ended the eeg study, and further stumped the doctors. The seizure this morning started again on the right side of her brain (as was not expected), but it started in a completely different area of the right side than the last. And like the last, it moved across her brain to the left side and affected different areas. So they don’t know what is causing them exactly since it doesn’t fall in line with where her brain damage is or where her cysts are. And this complicates treatment- the seizures are not localized and not following a pattern. This eliminates the surgical option- as much as we didn’t like the idea of surgery, it was a promising fix down the road.
There have been a lot of doctors collaborating and following us today, and they even mentioned possibly sharing her case at their epilepsy seminar. We know she’s in the best hands as far as medical care, and especially in the best hands as she is held by the ultimate Healer. But as we’ve watched her endure so much today and heard her ask the nurses, “Will it hurt?”… as we’ve been apart from our big girls and wiped their tears… as we’ve stood helplessly by and asked questions the doctors cannot answer… we are weary.
Tonight I’m sitting by Harper’s bedside and Kirby is sleeping in the waiting room. Harper’s daily meds have been increased again, just about maxing her out, and she’s being put on a third medication for a few days to help her recover and ward off any more seizures for now. If all goes well overnight and in the morning, they are hoping to be able to send us home tomorrow afternoon or Wednesday, and then we will follow up with her regular neurologist up here to discuss any other options or new developments.
We’ve been overwhelmed by all of the messages and encouragement you’ve sent our way, and we are so thankful for your prayers- they’ve carried us through a long day, and we look forward to seeing more answered prayers in the morning. ❤