An ambulance ride on New Years Day landed Libby in Erlanger Hospital, but her stay lasted much longer than any of us expected. It took some time but the doctors were able to control the nausea, however they could not stop the crushing headaches which caused Libby to spend a lot of time with a damp rag draped over her eyes in an attempt to block out all light and stimuli.
The oscillation between good news and bad news increased in frequency and amplitude beginning that first day of 2014. One of Libby’s doctors told us that the new experimental drug that she had recently started was likely the reason for her headache and nausea, “Therefore,” he said with medical confidence, “As soon as the side effects from the drug wear off, this little girl will be going home… probably tomorrow”; fantastic news that I relayed to friends and family as soon as the doctor left the room.
Before that good news got three “likes” on Facebook things changed. Helen, Jerod and I were all in the hospital room as Libby rested beneath her rag in an attempt to fight off yet another headache. A nurse was in the room taking vitals when Libby began jerking violently, her eyes fluttered and rolled back in her head and then her body went limp. The nurse fumbled nervously for the call button and reported a code blue.
I felt useless as the room quickly filled with medical staff coming from every direction, a doctor began barking orders to the Rapid Response Team while we shrunk into a corner unable to see Libby. I remember thinking to myself, “Surely it’s not going to end like this, I haven’t even said goodbye!”
Following the initial flurry of activity, the team seemed to be doing very little to actually help Libby until one of the nurses asked, “Mrs. Gilley can you hear me? Mrs. Gilley do you know where you are?” Silence. Seconds later she asked again, “Mrs. Gilley can you hear me? Do you know where you are?” Then a very small, sweet voice from within the circle of white coats and blue scrubs said, ” I know that I’m in my hospital room…but I don’t think I have met any of you.” After some nervous laughter from the medical team Libby, a little stronger now, continued, “Why are all of you in my room? Did I do something wrong?”
Over the next few days the seizures increased until Libby was having as many as five a day and the Rapid Response Team responded so many times that they were soon on a first name basis with us all. Then as the seizures became almost routine we stopped calling the team or even the nurse and I eventually learned to handled the seizures myself.
At the time I could not have imagined anything worse than watching Libby have a seizure and pass out but then toward the end of the week Libby seized while her mom and sister were visiting and although I had done my best to prepare them both, it was difficult to look in her mother’s eyes while trying to coax her daughter back to consciousness.
Later that night Libby’s sister, her mom and I made the decision to call in all of the family in on the next day to see Libby, for what we all believed would be the last time.