I’m writing this from a hospital room at Duke after midnight, so please excuse my typos and mistakes, but I wanted to record the events of the last 24 hours while they’re fresh in my mind. And before I get to the details, let me just say that we are absolutely OVERWHELMED at the outpouring of God’s love that we have felt… All of the messages and words of encouragement, hospital visits, offers of help, caring for our girls… And PRAYING!… We are a blessed family to have such phenomenal family and friends.
Now, the details on our day… I woke up shortly after 6:30 Wednesday morning to a rhythmic tapping on my back, followed by the guttural noises of Harper seizing beside me. I called Kirby into the room and we started watching the clock and trying to get her to respond to us, and at one point she seemed to, so we hesitated on administering the Diastat. We got her into the living room where she started to vomit and convulse again, so we grabbed the meds and called the paramedics.
By the time they arrived she seemed postictal, but in the ambulance her oxygen level started to drop, requiring her to wear an oxygen max. We got right into the ER this time and saw a doctor right away, and his plan was to just so the usual bloodwork and keep an eye on her for a little while, despite the fact that I requested he call her doctor at Duke. However, Kirby and I began to notice that her eyes were shifting right and beading off and on, but they insisted she was fine.
After about an hour or so, Harper began vomiting- her eyes would flutter and bead like crazy, then she would commit, and this happened 5-6 times in a row before someone finally listened to us. However, even then they decided to just give her Zofran for nausea… But they couldn’t give it to her because her jaws were completely clenched shut, and they finally believed us that she was seizing. The doctor decided to call Duke, but told me that sending her there probably wasn’t an option.
The nurse started an IV, and within minutes Harper went into a full seizure. They administered one dose of Ativan but no change at all, so they did a second dose and started an IV drip of another medication… And still no change. Everyone began panicking as it continued on and her oxygen levels dropped again. They did one more double dose of Ativan, and the full body convulsions subsided, but her right side and mouth continued to spasm for another hour.
We got word that Duke had Harper on their list as a priority patient, so she would get the first bed to come available. She finally fell into a deep sleep, and was able to come off of the oxygen mask mid-afternoon. She developed a fever and kept it most of the day, but woke up asking about her big sisters. She was a little woozy and irritable, and it took her a while to use her right arm at all, but she became more and more like herself through the evening.
We left Wilmington in an ambulance around 8:30, and she was tough to deal with all the way to Durham. They had her room ready for her, did the initial assessment, and now we’re settled in for hopefully a few hours of sleep before the doctors make rounds in the morning.
We have no idea what to expect tomorrow, but we feel confident that Harper is exactly where she needs to be right now. She is in good hands here at Duke, but she’s in the best hands of our Heavenly Father. Thank you all for praying us through the day…