We are now relaxing in our spacious, quiet, PRIVATE room...it's pretty darn nice after the cramped PICU room that we shared with another patient. Julia is doing well, her fever is gone, the swelling is definitely more pronounced today and she is still not in a good mood. Michael came and took over for me around 9:30am and I went back to the room to take a quick nap. He said that she got a sponge bath before they moved her and when the nurse was putting lotion on her she produced the closest thing to a smile that has been seen since we got here.
The frustrating part...STILL no seizures. We're getting a little nervous, to be honest. How could a child who produced daily seizures you could set your watch to suddenly just stop? Is it the morphine? Surely not, right? We've seen a couple of single twitches that look like perhaps a cluster is about to start but then nothing. Dr. Asano looked at one on the EEG and said there was some spiking but no seizure associated with it. We've got all day today and tomorrow but we really need to get some seizures recorded. She did not want to cooperate with some of the mapping that Dr. Asano attempted today, naming pictures, etc. She also still hasn't had anything to drink or eat. This morning she asked me hopefully "all done?" as in, can we go home now? I wish kiddo.
Sounds weird, but please pray for seizures!