I go through phases of epilepsy research. There are times that I cannot absorb enough information and other times I PHYSICALLY cannot make myself look into epilepsy. I guess 2 years later, it is still a bit surreal. Well this past week I have had my face in the computer reading blogs, researching websites and emailing new friends who share the world of epilepsy with us. I have gained a plethera of information and I have formed quite a list for Dr Chez (sorry doc). During my research, I did happen upon a type of epilepsy called Status Epilepticus. Meghan has had this quite a few times. Whenever she goes into a Generalized Tonic Clonic, she can never pull herself out of them on her own. It takes high doses of Diastat and Ativan, to the point of intubation, for them to stop. But reading about this brings me back to an event that, to this day almost 2 full years later, physically hurts my heart to think about.
In January of 2009, Meghan got some random virus which ended up in double ear infections. Matt and I took her to the after hours clinic where she ended up going into a Status Epilepticus seizure. The doctor sent us over to the ER, which was just on the other side of the parking lot. We got right in, X-rays, CT scan, blood...the whole nine yards. They admitted us that night into the special care unit as she was being monitored. On the second day, the doctor came in and said that she can go home. She still had a fever, and was still apparently sick, but they did not see anymore seizure activity. That night we put her to bed. My mom told me that maybe we should stay up with her, but I said that she would be OK. She has not had anymore seizures. So off to bed we went. I got up the next day, got ready and went to work. At 8:30 that morning my mom went in to get Meghan up as she usually didn't sleep that long. Meghan was completly unconcious and unresponsive. She was breathing, but she wouldn't wake up. She was 10 months when this happened, and when we got back from the hospital after that episode, she was equivilent to a 2 1/2 month. That night she had a Status Epilepticus seizure that honestly probably lasted 3 to 4 hours, thus causing her brain damage.
This event will haunt me forever with the "if only's".
Since I have read so many personal experiences, I don't blame myself much anymore for Meghan's epilepsy or seizure condition (since we don't have an actual diagnoses yet). I did go through that and it sucked. I have really worked on having a better attitude about it, and I think it has worked. I was talking to my friend yesterday about a mutual friend of ours who's daughter has epilepsy. She said something like "I don't understand. There are so many parents who are crack heads or meth heads and have perfectly healthy children. Here are you guys who did everything right in pregnancy and look what happened." Awe friend, I have said that to myself a hundred times in the past, talked to God about it wanting that explained. But here is where I know I have grown as a mother and I am so damn proud of myself. Instead of responding with "It's not fair. I did do everything right." I responded "But could those parents care for children like ours. Not in a million years." For me this is a HUGE breakthrough. I can do this, and I am so proud of my Meghan that she has been so patient with me while I journeyed to this point. Thank you my Meggers!!
9 months ago