> I had a night similar to that when Blondi was sick. We finally had a doctor who recognized Rasmussen's, recognized that it was moving incredibly fast in herbrain (faster than other kids anyway since nothing about Rasmussen's is"normal"), recognized that she was on medication that would cause too muchbleeding during her surgery, so we had to switch back to seizure meds that Iknew wouldn't work. The problem though was that she was in for her biopsy, hadgone through it, changed her meds, but the seizures were ENDLESS. Nothing helped. I didn't sleep because I was still counting the minutes, still tryingto figure out at what point we needed diastat, etc., and we hadn't even left the hospital.>> So I finally lost it all over a poor resident who got stuck with the nightshift, and I screamed and yelled about the sucky hospital giving up on mydaughter, and who the hell did they think they were and weren't they supposed tobe stopping these seizures or at least controlling them --- I'm sure its stuff we've all said at some point in anger/fear/frustration and this crummysituation. So the poor resident got on the phone with his supervising on-call doctor who didn't like what I had to say either, and he finally called Dr. Park the neuro.
Now, Dr. Park is a tiny, soft spoken, gentle Korean national, who came in the middle of the night to "deal with Ms. Dawson." As I sat there watching Blondie's left side going crazy he took me by the shoulders and said - "she doesn't have epilepsy. I can't control Rasmussen's like I can epilepsy. She has a bad illness. In 20 days I can stop it. Take her home and keep her safe. I felt totally defeated. BUT I suddenly, clearly, understood that Rasmussen's wasn't caused by epilepsy, but that Rasmussen's was a disease that caused seizures, and for some reason I've always chosen to compartmentalize that - I will never say that my daughter had epilepsy because in my mind she didn't.
So I took her home, and she slept between us - which sucked for me because I slept on the left with all her seizures and I got kicked every five minutes which then woke me up and then of course I just waited for the next one. Brian started sleeping in a different room so he could get up and work in the morning,and my mom came over to watch over Blondie while I slept as long as I could during the day. I/We zombie parented for 20 days to 4 girls and literally lived in 10 minute increments. We must have looked pretty bad because neighbors showed up to mow the grass and bring in dinners, and shuffle my other kids around.
Your child probably has something different than Rassmussen's, but the idea is the same. You are in the sucky suckiest part. The part where your child looks to be getting worse everyday. You are terrified of the surgery, but ready for it, meanwhile its still too far away. My hope for your family is that hersurgery brings XXXX peace. I can't tell you how strange it was to look at Blondie in the ICU and look at her "being still." 10 days later I still fell apart -the tension had just been storing itself up, and I was still tired, and sheneeded help turning over at night - but instead of every ten minutes I wassleeping for 2 hours at a time. Finally, one night, at about 3:00 a.m. I looked at a tiny 3 yo who just had brain surgery, put my hands on my hips and said,"YOU ARE LEARNING TO TURN OVER BY YOURSELF, RIGHT NOW BECAUSE MOMMY IS TIRED ANDCAN'T TAKE IT ANYMORE!!!!!!!" (Not my best parenting moment) We spent about 30minutes figuring it out, and then she could do it and I started sleeping again. I also fell apart 10 months later when I thought I was being a good mom because I had arranged therapies for after school (I'm a teacher) so I could work, and then pick her up and go. What I didn't count on was how LONG 3 hours is with one kid having therapy and 3 others bored out of their mind in a waiting room. I was having chest pain from stress, and finally just fell apart. I've been fine since then, Brian just had to step in more, and he gladly did, and then other family members would give me a break from taking her and the others to therapies every now and then.>>
My point (after my long story) is this - you are in the worst part. Call your support system - you need someone to help you maintain "normalcy" whether that is a clean house, a good night's sleep, groceries, dinner, whatever..... Call EVERYONE - or call your main person and say, "I need you" and have them call EVERYONE - neighbors, church, work, school, whatever. Your goal is to getthrough the next 3 weeks so that you can get through the time after that. Because while our hope is that there are no more seizures the recovery is also tough. Its better, but you're still working from a lot of stress and exhaustion. Life does resume. Meanwhile rant and rave all you want, we arehere to listen, and support. If you want to call to vent feel free - I have answered phone calls at 3 a.m. before. I have definitely been there and done that, and you know what - I have permanently blocked out all that info about what meds she had, and when - I absolutely don't live in that time period any more, and most importantly, neither does Blondie.
I'll blog more about my opinions tomorrow related to this - because FOLKS -- WE NEED TO DO MORE FOR THOSE IN NEED.
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