Saturday, August 31, 2013
I feel like so much has happened since our previous blog entry that I don't feel like it is possible to even put it all into words. We had an overnight EEG that turned into a two night EEG. The results were not easy to read for his doctor with healing and things going on but PJ is having subclinical seizures as well as his other episodes. It is all right sided and isn't spreading to the left which is really good to know. Unfortunately the area that is showing as dysplastic is an area that will impair both his vision and his motor if removed. We are still weaning off of Topomax currently and maybe keppra but it is too dangerous, at this point, to take his clonazepam away. He has been on it for nearly two years twice a day and taking it away could trigger seizures not related to his condition just purely from the withdraw. His trileptil is slowly on the rise though in hopes, that eventually, it will be his only medication. We talked to his neurosurgeon last week and he feels that the next step is a hemispherectomy for PJ. Our latest date for surgery is October 3 but he is amazing and said that if he can he will do it sooner. I am going through a lot of conflicting emotions regarding this decision, although I know it needs to be done. I always have said "I'm not worried, I just want him seizure free." Deep down though I feel horribly sickened that we will have a new set of difficulties for PJ to overcome and suddenly all of this has become very very real to me. I am kind of feeling it is a lose lose situation but when thinking of what I would want I would pick better cognition and communication with no or drastically reduced seizures and impaired mobility over good physical mobility with multiple seizures and very impaired cognition and communication. Making the decision for my child though is nothing short of heartbreaking. Of course I am a worrier so I also can't help but worry about the left hemisphere which has always been perfect on tests but that "what if.." Always creeps up on me and gets me wondering if that other side is as good as the tests have shown. Ugh. My husband is so relaxed and together and keeps reminding me that just because PJ has a good day doesn't mean it's gone, and he is right. We were told numerous times that once this type of dysplasia becomes active it doesn't stop...we have always found this to be true even on good days he was having subclinicals and even more unnerving seizures not even readable through the EEGs. It's just tough and has proved to not get any easier on any of us. All we can hope and pray for is a successful surgery with no complications, that he does become seizure free, and that he has a speedy recovery.