A month after the EEG we had our follow up visit with the neurologist. He was fairly sure that the seizures were coming from one area in Owen's brain(the EEG showed two places, but he thought that the second was just "mirroring"). In order to prepare for surgery Owen would need to have more seizures recorded as well as some tests to determine what functions that area of the brain controlled. The hospital couldn't get us in until the end of January for the testing though. Almost 4 months from that point, and 5 months from when the seizures increased so dramatically. We asked the doctor if there were any other hospitals around that could do the tests as we weren't comfortable waiting that long. We also asked about an MRI, since Owen hadn't had one since 5 days after his birth. The doctor was surprised that we hadn't already had an MRI (like he wasn't the person who would have ordered one) and scheduled one for the end of October.
Meanwhile we hadn't heard back from the doctor about another local hospital that could do the needed tests, so we had been asking EVERYONE if they knew of anywhere else. No one recommended any other hospital to us. We made calls to hospitals out of state and were informed that it would be too dangerous for Owen to travel. They also referred us to the hospital we were already using, but told us to go to emergency and refuse to leave until they treated Owen.
Our local paramedics and fire dept volunteers were on a first name basis with us by this point as we were still having to call 911 at least once every 2 weeks and often several times a week. We made a plan that the next time Owen had trouble breathing during a seizure, we would transport to our local hospital and demand to be transported to the hospital in Seattle. We also made back up plans to stay in Seattle after the MRI and go from hospital to hospital until we found someone who would take our concerns seriously if our hospital refused to keep us.
The next day, they hadn't called by noon. At 12:30 Rod picked up the phone to call them and it rang! Rod answered it and the person on the other line apologized for being late calling. They told us they could see Owen first thing Monday morning. They wanted us to come to Seattle the night before though since they didn't want Owen sleep deprived since that was such a huge seizure trigger for him. She had been late calling because she was getting emergency insurance approval for the admission. They told us several times that they considered Owen to be an emergency case and that he needed to be seen as soon as possible.
A few hours later as we were making plans for the other kids while we were in Seattle, the other hospital called me and told us that they could schedule Owen for Thursday! I quickly talked to Rod and we decided that we felt much more comfortable with Swedish. We didn't want to be in a place where we were always having to fight to get the proper treatment. I told the scheduler to take us off of their list permanently. I felt such a sense of relief. We really felt that we were better off at the new hospital.
It looks like maybe this story needs a part three. I will get a post up about our video EEG and our care at the new hospital soon.