Sunday, September 1, 2013

One Year Ago Today- Part Two

 Read part one here!

 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.

 October rolled around and a couple of days before the MRI, Owen got sick. He needed to be sedated for the MRI, so we had to reschedule for November 1st.
 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.

 Finally it was November 1st. Rod, Owen, Brenna, and I headed to Seattle prepared to stay for at least 4-5 days. We made plans for the other kids at home for that long too. We checked in for Owen's MRI and once he was all prepped and they took him for the actual procedure, Rod headed upstairs to the patient advocates office to demand that they do something. I waited with Brenna for Owen to come back from the MRI. Rod finally came back with the head "problem solver" from the hospital who explained that they were packed to overflowing and would not keep us no matter what we did. He told us that he would present Owen's case at the meeting the next day when patients were prioritized and see if they could get him in sooner, but that was all he could do. He informed us that if things did get really bad and my son needed an ICU bed, they would find room for him. So, they would find a place for him after he was horribly damaged, but wouldn't do anything to prevent that from happening. Besides the fact that we had spent several hours in our local ER a year earlier with transport waiting and no where to go because they didn't have room for us then. We asked about other hospitals in the area and were told that none of them would take children his age. At this point I was trying to decide whether to scream or cry. No one would help us. Our local paramedics were worried they wouldn't get to us in time, and there didn't seem to be anywhere else to go. As we were leaving the room, still prepared to check with every hospital in town even if they all turned us away, the advocate asked us if we had tried Swedish. We told him that no one had mentioned it to us before (I did know that Swedish had a great neurology program as my uncle had been treated there for an injury years earlier, but we didn't know they had a pediatrics unit).

 We decided to try Swedish next. We walked into the emergency department at 4:50 PM on Thursday. They told us it would be a little bit of  a wait as the pediatrician came on duty at 5:00 and they wanted us to see her. We were taken to a room just after 5:00 and the nurse took all of Owen's vitals, then the doctor came in about 5 minutes later. They ran bloodwork that we had asked our old hospital for repeatedly and discovered that Owen didn't have therapeutic levels of any of his medications in his system. They upped his Zonisimide prescription from 100 to 175 mg. The doctor came back after the labs were finished and told us that the neurology unit couldn't take us that night, but they would call by noon the next day and set up an appointment for the next week or two. We decided that that, especially with the medication increase would be alright, so we went home.

 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.

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