“St. Paul or Bust” or “Long Day Coming”

Thank God it’s Friday, time to kick back and relax or spend the weekend in a hospital. We left Des Moines around 2:30pm much later than anticipated; it took a long time to get all of the discharge paperwork put together. I went home to pack and let Hoover out. My Brother was going to take care of Hoover while we were gone. He is not Hoover’s biggest fan but I think Hoover grew on him over the next few days.

We headed up to St. Paul with a pit stop in Clear Lake so the whole family could eat. We arrived at Children’s United Hospital and were checked into the Pediatric Eplipsey Unit; we then answered another barrage of medical questions. Grace was hooked up to the Video EEG that she would remain on for the next three days.

We had no place to stay and were told that only one parent could stay in the room with Grace. We were not only shocked and appalled but we had no idea what to do next. We were both so tired and beaten down with all of the information we had digested in the past 48 hours that finding a hotel wasn’t even something we were able to think about. Our brains could not function outside of anything but caring for Grace, when tasked with something outside of this realm we just shutdown.

We spoke with Dr. Ritter around 10pm. Ritter had reviewed the MRI and believed that Grace did not have the rare and life threatening form of Epilepsy! He wanted to run the Video EEG for the weekend and have Grace see an Ophthalmologist to officially rule out this rare and life threatening form of Epilepsy. Ritter asked where we would be staying and told us about some apartments that the hospital rented out for families that were connected to the Hospital; we were able to get a room.