The prior weekend, April 17-19, was a complete whirlwind that it's really hard to even begin to find the starting place!
Guess I will start with that week. Darcy had an appointment with her Neurologist to follow-up with her seizure medicine, and he seemed to think everything was going well and even wanted us to up her medicine a little b/c of her little growth spurt, plus he gave us a prescription for an "emergency" medication just in case she were to have a prolonged seizure or multiple seizures in a given period that we felt she would need medication control. His words to us were, "I'm sure you will never need it, but b/c she is old enough I will go ahead and write a prescription for it." *Famous last words*
Then on Friday, April 17th (our 5 year Anniversary), Darcy had an appointment with her shunt Neuro Team and they were just raving how well she was doing compare to last time and they were just blown away with her progress! We left feeling so excited and finally seeing the light... only to have the wind taken out of our sales hours later!
We (Eric and I) were getting ready for our lunch date when I received a phone call from the Daycare that Darcy was having a seizure like no seizure that had seen before and that it was lasting or lasted more than 5 minutes. I told them to watch her and let me know if anything changes, and that I would call her Dr and then call them back. I was now in the car with Eric and received another call from Daycare that she was having another seizure and it was already over 5 minutes, they said they felt like we should come get her and before they even said that we both said we would rather go there then to lunch! So on our way to get her I called all her Dr.s and our favorite NP Amanda was the only one that called me back quickly. She suggested we take her to the ER so they could look her over and if she were to have another one then they would be able to help her.
So we went straight to the ER, where she snapped back to her beautiful smiling self and made everyone else in the ER look like they were literally on deaths door. We had not gotten the "emergency" med filled yet, as we had not thought we would need it as soon as we did. So they looked her over monitored her and then released us a couple hours later.
Darcy at the ER 4-17-2015
She seemed to be doing better thru Friday night and Saturday, and of course we talked ourselves out of getting her "emergency" medication. Trust me I've learned my lesson, I will not ever think everything is good and not have a back up!
Saturday night went to bed fine, and then at 1:30 Darcy woke up for her normal feeding, while I was feeding her she began to have a seizure. I was trying to get her to come too when I realized she was snapping out of it, I called for Eric and by the time he came in I'm going to say she had already been having a seizure for 10 minutes and still wasn't showing signs of stopping! Eric was going to go get her "emergency" med when I told him if he didn't take her to the ER that I was going too. I just felt that the best for her would be going there to get the proper medication and fast. Eric rushed her to the ER and as he was getting her out of the car he could tell she was having another seizure, so he grabbed her and ran inside and they immediately took her back and put an IV into her little arm and administered medication. He said that after a minute or so she had come out of it and was just sleepy. Unfortunately, it was a Saturday night/Sunday morning so all the crazies were in and out of the ER, so once they got Darcy under control they had to attend to them. Eric said at one point he had an EMT in the room with him, they were running short staffed. They did a CT on her to make sure nothing had changed since her MRI a few weeks prior and luckily nothing showed up. They were in contact with her Neurologist the entire time, and he asked for her to be admitted for monitoring while they increased her medication. Apparently the only thing they could find is that the level of medication in her blood wasn't high enough to stop seizures. They upped her meds and we all hung out in the hospital Sunday afternoon. Luckily she was doing well that they discharged her around 5:00 and we all got home in time for supper and bed! **We ALL were extremely tired!**
I'm pleased to say (and hope I'm not jinxing her) but she has been seizure free for over a week now!I can also write positive stuff...I promise! Darcy has started her Vision Therapy and her Physical Therapy. This excites us!!! We have noticed her growth the past few weeks without the therapy that we cannot wait to see how much she grows and blossoms with her therapy. I will keep you all posted on how she is coming along, so far we are very pleased with both therapist and feel like this is going to be so GOOD for our little D - bug!!
Thanks for the continue prayers, we feel them and they are much needed and appreciated!!
Love to all!
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