I drove Elin into the hospital and thankfully she waited until we were checked into the ED (emergency dept- they don't call it the ER because they have many rooms) to have her third seizure. She was hooked up to the monitors so we were able to capture her heart rhythms and heart rate and record it for the cardiologists. We were admitted and sent up to the ICU (our home away from home). Again- Elin waited until we were safely up in the PICU and had her fourth seizure. We were able to capture her heart rhythms this time too. I spent the night in the room with her and waited to see what the morning would bring.
Medication changes were discussed early on Wednesday morning, but when rounds started about 11 they had shifted course. Our neurologist decided she wanted Elin hooked up to an EEG for a long period of time in hopes of capturing a seizure. I was doubtful this would work. Elin's recent seizure history is to cluster in one day and then not have anymore for a week or two. But I was happy to have her hooked up because if we could see what her brain does during one of these episodes it would open up new treatment options and give us a glimpse into why she desaturates so quickly.Days passed and we stayed in the PICU. Elin was such a good sport. She had all these wires glued to her head and had to wear a helmet to keep her from pulling them off. She slept terribly in the hospital with all the interruptions, monitors flashing and beeping, and roommates crying, but was able to maintain a sunny disposition throughout the day. I would be there most the day with either my mom or Susie coming in to relieve me at times. Myles would come in after work and I would leave for a while to teach a class and then return to spend the night. On Thursday the neurologists decided we should take Elin off the Keppra since it was causing side effects (disturbing sleep, irritability etc). We were all hoping this might be enough to lower her threshold and induce a seizure.
By the time Friday rolled around and still nothing had happened we were about to give up. I had left for the morning to teach and Susie was on duty. She had a seizure at 8:45am while she was still hooked up to the EEG. It's a miracle that we caught one. I was excited to go back to the hospital to learn all about her EEG results. By the time I got there, she had had three more, so they had four seizures captured on EEG. They had enough information to go on and had removed all the electrodes from her scalp and head. She was wiped out, napping with a towel wrapped around her head in hopes that the conditioner they applied after removing the electrodes would help soften the glue in her hair.
Want to know what we found out? It's incredible. The first thing to mention is that they also had a video camera recording Elin 24/7 while she was hooked up to the EEG. The neurologists were able to show me the video and her brain activity simultaneously. Her seizures lasted about 15-20 seconds and were BEFORE she stopped breathing. In the video we could see Susie standing at the crib playing with Elin. Elin's body starts to go limp and shake ever so slightly, but her oxygen level remains at 100% during the seizure. It's not until the seizure is ending that you see Susie get concerned and call the nurse, then her oxygen drops and they bag her. BUT we can see on the EEG that her seizure is completely done by the time her oxygen levels drop. All four of these seizures are focal seizures. She is still at risk of having global seizures because of her chromosomal abnormality but the EEG didn't show any global activity. A focal seizure is an electronic discharge/disturbance focused in one part of the brain. In Elin's case, hers was in her left temporal lobe. This particular section controls a lot of our autonomic functions (ie heart rate, breathing etc). The neurologists think that by the the time her seizure has ended she just can't remember to breath again.
So what's the solution: Well that's where things get complicated. For the time being, we have added back the valproic acid (Depakote) in conjunction with the lacosamide and topirimate. Since we now know what type of seizures she has, we have more drug options available to us. If she has more seizures on these current meds, we will try a new course of drugs that target focal seizures. So that's the drug news, but even more exciting is the possibility of finding this brain matter and extracting it. Yes- brain surgery, but it's not that easy. First we have to have an MRI. Thankfully, when we were shopping for CI's we made sure to get one with a removable magnet. So just to get an MRI it will require surgery to remove her CI magnet. Then we have to have several MRI's to determine if we can find the exact area that is causing the seizures and also make sure she won't have any functional repercussions from removing this particular matter. In other words, we don't want to take out a part of her brain that will affect her motor control, speech, vision, cognition etc. Then after all these things are determined and if it is a possibly to accurately and safely remove this brain matter, she has to have brain surgery. Yikes- sounds like a lot more time in the hospital undergoing scary procedures.But if they can remove it, how amazing would it be if we could lessen or stop Elin's seizures? Perhaps take her off all these drugs that have terrible side effects and live a life where we are all less scared of losing her. I can't let myself get here mentally, there are WAY too many "ifs" on the path to this conclusion, but wow, that would be great right?
