2.14.2011

My Valentine's Heart...Attack


Last time I blogged it was a Monday and I wasn't feeling too hot and yet again, I find it is Monday and I feel less than stellar. I was very happy to wake up to rain (it has been so warm and sunny I have actually missed rain, crazy I know) even though my body was clearly not happy about having to get moving, it obliged. Claire was bright eyed and bushy tailed all ready for the big party at school. For us Valentine's Day is almost bigger than Christmas; pink, glitter, hearts, all up our alley. Claire was even a little wise cracker this morning as I was trying to get things together she used her talker to say "mom late" as if I wasn't aware already. We made it to school with a minute to spare and she was off to her mainstream classroom with a sack full of cards to hand out and a huge grin on her face. Chloe and I got coffee and took her gift over to her little buddy Lucas. It was so cute to see them really start to play together. She handed him the little bag and the picture she drew, he gave her a hug and said 'thank you Chloe' in the cutest almost 2 year tone, it was wonderful. Next was Whole Foods, while I am aware not everyone loves that place I do and I was excited to get back into the groove and just try to make myself feel better with business. Just before I got to the exit my phone rang, it was Claire's teacher. She said Claire was having some crazy episodes and asked if I was close, so I went straight there. When I got there she looked alright, I took her and she smiled, she even stood very well. We thought maybe a bit of food would be good so we walked to her chair at the table and sat down. Then it happened, she closed her eyes and clenched her fist, this was different from the other weird creepy laughing spells, her tongue rolled in her mouth and she really looked like she was trying to fight it. Quickly I got Dr. Mary (who I am convinced is actually an angel in a human body) on the phone. You know it is bad when you get the doc quickly, it says that they are really scared too. She advised me and I called 911. I called 911, for my baby, it was surreal. I hung up with them, called Jared and asked him to come get Chloe. I then sat on the floor and held Claire until the medics arrived. During that time the episodes got worse, at one point she went a little purple and I swear my heart stopped beating in that moment. The crazy thing about it all was that in between the episodes, she was pretty close to fine, not 100% but 90% and for us, a good day is 90%. The medics came and we told them that we had hoped to go to LPCH where her neuro was. But since we are out in the sticks they couldn't so we went to the local hospital to get stable and discuss a transfer. When we got there it was scary. She wasn't getting better so the plan was to get an IV in and then give her Diastat to stop it. In the process of the intake, getting the vitals and enough people to get the IV in 30 minutes passed. Somehow, in that 30 minutes the episodes stopped all on their own. Just as they were getting ready to give the medication we decided to wait for one more episode since it had been awhile, and it never came. Slowly the plan morphed from getting an ambulance to take us to LPCH to maybe driving ourselves to eventually just going home because she was fine. We are working on getting the EEG moved up so that we can figure out what to do with this little girl who just loves to keep everyone on their toes. We got home and she had a huge lunch and a good nap. She woke up for dinner smiling and really enjoyed her special Valentine's Day chocolate that she got. It is hard to know what to do with a day like this. It stared normal and ended normal, but man was there a lot of crazy in between. I think that the biggest take away is to know that we can go through something like this and come out on the other side. The medics were great, the er staff was great to us, my friends were there and Jared and I make a mean crisis surviving team. It's all reminds me of the lyrics to the song we had listened to on the way to school, The Beatles: All You Need is Love:
There's nothing you can do that can't be done
Nothing you can sing that can't be sung
Nothing you can say but you can learn how to play the game
It's easy
Alright, maybe it wasn't easy, but we did it.

2 comments:

Dawn said...

Oh Colleen, I am so sorry. Rett Syndrome sucks. the end.

Unknown said...

So glad that she ended the night okay. MOre okay that you and Jared, but hell, that's what they give us sometimes isn't it? Is she okay now? Any seizures? My worst fear is seizures. I never want any part of them.