Dr. Dlugos came to meet with us after the PREP meeting. He said that they consider the seizures to be atypical, which is a good sign. He acknowledged that it represents an emotional setback, but that they do not consider the surgery a failure. We still have the potential for a 50 - 70 % cure rate, only time will tell.
He said that now is not the time to do anything drastic. They want to keep her on her pre-surgery AED medicine, and add a low dose of Phenobarbital to keep the seizures in check until her brain settles down. The seizures may be attributable to the surgery, grids, inflammation. Or they could represent the "new normal". We just don't know for now.
They are hooking up Lauren to a portable EEG monitor (the Cole Hamels, there is some "head case" comment in there somewhere, just can't find it now). Dr. Dlugos was not keen on doing that. He feels that we need to be on a healing, dis-connecting track, if this is the new normal, we will have plenty of time to monitor seizures. However, I think the team convinced him that it may be useful for now to monitor her EEG to see if there is any "quiet" activity.
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OMG what a LONG brutal 24 hours for all of you!! Sounds like you did a great job Daddy from PJ time to appropriately wigging out to get Lauren the care she needed after the episodes last night! Man-o-man I just keep thinking about you guys. Lauren is a very special, brave, courageous young woman. Please let her know (even though she doesn't know me AT ALL), that I think she is an inspiration and special special spirit!!! She WILL get thru this, especially with the amount of love and prayers surrounding her.....God Bless!!! Chris, you have become a professional blogger! great job. Give my love to Sandy..... Eileen
ReplyDeleteWe are all sick and sorry. don't know what to say but thanks for keeping us in the loop and part of this over these past weeks. We are here with you every step of the way. Lauren is so amazing and sorrounded by the best people and family. I know running and crying too, it's so cleansing. go run and cry both of you so you can be better people for her when she cries. She will be okay. Shes too tough to let this get her. In talking with doctor family members...sounds perfectly reasonable that this could be result of a stressed, swollen , tired brain. She will be okay. we love you all and are here every day. Love, andrea
ReplyDeleteLauren, the brain is a weird and wonderful organ. When you go to rehab, it will be hard work, but with effort so many neural connections can be taught or retaught. Like any task you are good at, practice presses it into the brain. After all, my brownies were not perfected over night... All kidding aside, you are young, have a well respected team of health care people, and a huge bunch of family and friends who will help you when times are rough. We love you, even though that doesn't help your head hurt less or the nausea to pass. We hope it helps to remember that taking one day at a time, makes the healing process more manageable. When things suck, it is so easy to think they always will. The truth is that you will have very good times too. If things feel overwhelming, have a friend or family member remind you that there will be improvements, and until you feel well enough to feel them, just concentrate on full, slow breathing. Use music to help you to relax your mind and regulate your moods and body processes. Have people gently massage your hands or feet. These simple measures can lessen or even defeat scary stress, even if it is only for a while. We believe in you. aunt leslie
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