I’m losing track of the days. I’ve been to the ER 3 times in one week; twice in Knoxville and once in Nashville. Knoxville doesn’t touch Vanderbilt University Medical Center. We are definitely in the right place. ETCH just isn’t equipped to handle Katie. We got an appointment with neurology mid March but Friday night Katie was getting worse. She had other ideas about how this would all go down. We drove up Saturday morning. We spent several hours in the ER but finally got hooked up to the EEG and then moved to the pediatric floor. The bad news: Katie has had lots of seizures. The good news: Katie had a lot of seizures so there is lots of data to work with. I wish I could say we would spend a few more nights here, cut into her skull and fix the problem by mid week. However, this is really complicated stuff. Can I even call it “stuff”? Lots more testing needs to be done. She will get an MRI tomorrow with and without contrast (basically they add a tracer so they can see better). A more invasive type of EEG will need to be done followed by a PET scan. This will most likely be scheduled for another time.

Immediate goal = get the seizures under better control so she can safely go home.

Mid goal = get more testing on the calendar

Ultimate goal = Katie will hopefully be a candidate for surgery AND it will be approved by insurance. It’s only been performed in 2 pediatric patients post hemispherectomy…like…in the world.

I stayed with Katie last night. We typically get a hotel and take turns staying with her. She clustered yesterday and had about 25 seizures. NOT FUN but she slept all night in piece. She had about as many today but they have been giving her iv meds to calm things down. When I left her tonight she was feeling so bad. Her seizures have let up but she is retching and nauseous from all the meds in her system. She just can’t catch a break. The hope is she doing better tomorrow and will get her sedated MRI scan. I foresee us going home possible tomorrow but more likely Wednesday.

Hotel night for me equals a well deserved shower and a very comfortable bed. I suppose anything is more comfortable than the awful “bed” at the hospital. Back to the hospital in the morning.

Nathan is home holding down the fort. Hard to believe that he was in kindergarten when Katie has her first brain surgery and now he will be 18 in a few months. WOW! We have been faceTime’ing him trying to get Katie in a better mood. Her “Bubby” is her favorite human. She adores him but even he isn’t having much luck getting a smile on her face.

Thank you for the calls and messages. We really appreciate it. We feel the vibes and positive energy. More updates to come.