We discovered yesterday that Evie is indeed having seizures, and during an EEG she was actually seizing with no outward signs of a seizure. This means she may be having small seizures between the large ones that we experienced this past weekend. She also had some interesting findings in her blood-work that the geneticist thinks may be leading him to a diagnosis of what she has. He is positive about finding a diagnosis, but not too positive about the way things are going right now, especially with the addition of seizures to her already long list of symptoms.
Last night Evie was brought down to the Pediatric ICU. She took a bottle around 3:30pm Monday and I tried to feed her in the hours following, but by 9pm-ish she wouldn't open her eyes, respond to my voice, or take any kind of bottle/binky. They thought she might be seizing constantly, so she was brought to the PICU to start seizure medicine and keep a close eye on her breathing. Our pediatrician, the neurologist, and geneticist were all here within the hour, which if you have tried to get ahold of any of these people, you know is pretty miraculous, yet clued us in to the severity of the things they were looking at.
After another EEG they ruled out constant seizures, and we may be going back upstairs sometime today. Her oxygen level is all over the place, staying at 100 for a few minutes then dropping into the 80s, low 90s, and back up to the upper 90s. She has to stay above 93 for a significant amount of time before they will let her go home. It is looking like we will be here for a few days at least.
Since moving to the PICU last night around midnight she has had a CT scan, another EEG, a spinal tap, a urine sample, and more blood work. She is getting the works to try to find the cause of this unresponsiveness.
PRAYER requests: #1. that Evie comes back to being her normal self soon. It is really scary to watch her just lay in her bed. #2. That they an come up with a TREATABLE diagnosis, and that the diagnosis will be less severe than they are thinking right now. and #3.That John and I get some sort of rest while still managing to talk to all the doctors and get the information we need.
God is good all the time. We know (from experience!) that no matter the diagnosis, her prognosis can change at any time, and life threatening diagnoses are not always life threatening (:
Love you friends,