Ignorance and fear:

Barb and Kate have been at the Mayo Clinic in Rochester MN since Tuesday January 13th for behavioral evaluation and an extended EEG study. The goal is to identify the origin of the seizure activity in her brain and identify an informed course of care.

After living in the observation lab (hospital room) at St Mary Hospital (part of Mayo) they have collected enough seizure information data to make a recommendation for a surgical option. In order to accelerate the information gathering, Kate’s seizure medication was reduced by 50% the second day of the study and reduced again the next day.

The smaller seizures increased in frequency and intensity over the three day period, Kate has been miserable throughout the process. Along with the seizures she experiences periods of intense anxiety and anger. The “spike” activity recorded during these periods has confirmed the origin of the seizure activity. The larger “Partial Complex” seizures were not captured on EEG, this was an initial goal of the study, to insure a consistent source that might be addressed with a surgical solution.

Today, Monday January 19th (Paetra’s Birthday) the doctors are re-introducing Kate’s combination of seizure medications at the full dose to provide her some relief from the continuous seizures of the last five days. The neurologist Dr Wirrell, is satisfied with not pursuing the triggering of a larger seizure (Partial Complex) in the interest of recording it. She is satisfied with the data collected to this point and feels the medical team guiding Kate’s care can make an informed decision / recommendation with what has been collected to this point.

The prospect of the surgical procedure scares me in a deep way, at this point and I am struggling to develop a set of knowledge and coping skills to insulate myself. Without them I run the risk of falling apart at any point in the day when the thought of it takes me over. Ignorance and fear are my opponents.

Barb and Kate will hopefully be traveling home to Whitefish on Tuesday or Wednesday to rest and recover from a tough week in the hospital. Paetra and Isabelle are scheduled to compete in an alpine ski race in Big Sky Montana this weekend… will be a stretch to make it all happen. Understandable they are scarred for Kate and want the girls home soon, but also disappointed at the prospect of missing the race they have been training for since early December.