Im sitting on the porch reading my new Nicholas Sparks book..yes hokey but I really needed a lovey story to read...setting the usual mood of a bed and breakfast type of town near the beach where boy meets girl and falls in love..but there is always a secret in there someplace that comes out and in the end makes no difference in the love the two share...*sigh....I just love it. LOL in my broken camping chair as the foot rest has finally detached itself from the chair..LOL listening to the rustles in the woods hoping its not kitty catching me a new rodent-like friend.
My cell phone rings and its Madies school.
Madison has had a big seizure at school and I should come get her and that the Ambulance has been called.
Ok OK before we all GASP and repeat the word Ambulance...
I get the to health room fast. I live about 3 min from school...she is in her stroller still looking pretty out of it. and then smaller seizures continue to come.. jerk, a twitch a roll of the eyes...oh you name it...madie is crying as I take her out of her stroller and lay her down with her blanket where she cried and grabbed tight to her blanket.
I was sitting in there with her teacher,the nurse, the nurse's Aid and even the principal...
Waiting for the EMTs to arrive. EMTs?? Oh gee...
They ask me a slu of questions like how long has madie had seizures and if this is the first time she has had a bad one as she did that day...asking me what meds she is on and what meds she has been on...
HOW in gods name do you explain to people who are making me feel like I have no idea what I am doing and ohh that I really should call her doctor to have her checked out as well..
OK what is driving to Hartford Hospital going to do??? We alll know she has seizures. We (Me, Hubby and Doctors) all know that we are trying to gain control over her seizures and are doing the best we can!!!
I had to sign papers saying that I did not need them to take her to the hospital and that yes I am aware that her seizures are getting bad and yadda yadda..
I just wanted to scoop her up and run out of there..... I just could not believe the ammount of folks in there...as I frantically tried to call the nurses in Neurology to get them to give them the OK that Madie was OK even if I repeated it a million times and said that we are working on her meds..and that there was nothing I could do at that moment except get her home and let her rest.. I could go on and on how the school is just doing their jobs and really want to watch as closely as possible any of the dangers associated with seizures etc etc...
I think at one point she was so overstimulated that small seizures just kept comming and stiffenings and blank stares....Ohh like I said..I just wanted to hold her and let her sleep and get all these people off of her..
Yes It was bad one. I called Nuerology FINALLY and then went to get her blood work done... as she screamed the whole time after I woke her out of her seizure sleep....but it was needed... and now we will know tomorrow what the levels of her V.acid are...maybe just maybe they are getting low...maybe she is getting used to her med...who the heck knows. Got her home, took her little socks off and got her in her comfy pants and she was passed out...for about an hour and half...
I felt like the school was just waiting for me to say that I was going to take her home and "fix her" When EVERY DAY....I have an ache in my heart for my angel. I am at the mercy of the doctors who tell me to what to do...try this med..try this therapy...When for real when it all boils down I am her best advocate.
If a med has a bad effect I insist to take her off...If a therapy seems like bullshit I get her out (aka feeding therapy when a 20 year old tried to feed madie for 30 min)..
You could say I want to curl up in a ball and forget about today. Ready to watch some funny shows and have a glass of wine. Just spent.
I guess that is all I have to say about that...Thank you Forrest Gump.
Blood work is done. The day is allllmost done. Tub Tub time tonight and some mindless funny TV shows. Life is Grand Ok done venting. ahhhh. :)
2 comments:
So sorry. That really sucks. Seizures suck. Poor Madie. Poor mommy. Hopefully tomorrow will bring a better day and eventually they'll figure out the right combo of stuff to stop these seizures once and for all! I will keep you both in my prayers...
I'm sorry. Poor Madie! I haaaaaate seizures! I understand what you mean though, Emily's school calls me after every seizure they notice. Okay, it's getting old. She seizures a lot. She seizes every day. In fact, we know she seizures all day even when we DON'T see the seizures. Don't call me unless it's not stopping.
I know they are doing their best, and taking care of our kids, and love them, and all that. But it really stresses me out too!
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