Sunday, December 22, 2013

"You know I've seen a lot of what the world can do, and it's breaking my heart in two, cause I never wanna see you sad girl..."

I have a post sitting as a draft.  I never got a chance to edit it, so I never posted it.  It had pictures from last Halloween, because I never posted about last Halloween...
And then of course it had pictures from this Halloween...

I used this beautiful picture of Sarai dressed as a pilgrim from her Thanksgiving party at school...

And I wanted to share with you what a great little brother Caleb is, if you didn't see it on Facebook already...

"Sarai!  Fork!"  He then feeds her with a fork.
I wrote about her at-home EEG in November...

 And how we won't be weaning her off her medication like I had hoped because she still has "spiking" in her brain when she's sleeping.  But the doctor was hopeful that she will eventually outgrow the spiking as her brain matures. 

But it sure seems silly to post that post now.  We should tell you about what happened Friday.

Friday morning I went in to wake Sarai up.  It was 7:30.  She's usually up before then, but I let her sleep late because I was packing for our trip to Syracuse.  (Insert VERY guilty feelings.)  When I went in to get her, she was on her back, hands clenched, eyes open, and not really moving.  When I called her name, she didn't respond.  I touched her, and she didn't move.  Her eyes were stuck looking to the left, and there was vomit on the side of her face and on her pillow.  I yelled for Adam to come in.  She didn't respond to him either.  We both knew she was having a seizure, and she was NOT coming out of it.  We called Yvonne to get to the house ASAP, which she did, and we headed right out to the hospital.

The nurses at the hospital were great.  They all acted quickly, more quick than I've ever seen, and never made me feel like there was a reason to panic, which Adam and I were both already doing.  They immediately took her temperature, and it was a little over 94, which is hypothermic.  What the heck is that???  No one knows why.  Her doctor said, "Seizures can make your body do weird things. She was also having oxygen desaturations into the low 80's when the seizure spiked (you're supposed to be high 90's to 100).  Friggin de-sats.  Pulse oximeters are my nemesis, dating back to NICU 2009.  They gave her valium to stop the seizure, and that worked, and she rested for a long time.  She sat under a "bear hugger" for hours to bring her temperature up, and that also worked.

We had a plan to stay at Orange Regional (which is only a couple miles away from our house) with their pediatric neurologist monitoring her, but Sarai's pediatricians had another plan in mind.  Sarai's neurologist works out of Beth Israel in Manhattan, and they wanted us to go there, and they were very convincing.   And we guessed that made the best sense so her actual doctor can read her EEG, the same guy who read the one just last month.  We were transported by ambulance to the city in the early afternoon.

Once we got to Beth Israel, Sarai had a fever.  (One extreme to another!)  Not a high one, just over 100.  And she sort of fought that the rest of the evening.  The bear hugger?  The fact that the hospital was at least 80 degrees??  A virus??  No way to tell what caused it.

I assumed her EEG would show some kind of regression, and would show some seizures, but it didn't.  It was exactly the same as the one last month.  And by later that day, even though she had had a major seizure lasting at LEAST an hour, and no way to tell how long it was going on before I went in to get her, Sarai was talking and laughing, and fist pumping to her favorite pop artists...

Sarai was discharged yesterday (Saturday) with an increased dose of Keppra (which she takes every day) and diastat, to use in case this ever happens again so we can avoid going to the hospital.  She'll follow up with her neurologist next month, and probably have another EEG in a few months.  There is no way to know for sure what caused this.  It could have been a virus, according to her doctor.  This neurologist is new.  And we like him.  He seems really up to speed on research going on, alternative treatments, and is so open to questions and concerns. 
When we came home I was wondering how we'd EVER be able to sleep again!  How will we monitor Sarai in her bed??  If this happens again, how will we know?!  It's sort of ironic to me because her doctors have pushed for her to sleep on her own FOREVER, and she finally does, and now it feels like a safety concern!  Well, for now, Adam went out today and got a fancy-schmancy video monitor so we can watch her more closely.  And we moved the BabySense infant monitor from Caleb's room (he really doesn't need it) into Sarai's room (that would alert us if she ever stopped breathing).
Long story short... Friday was a VERY scary day.  The past couple days Sarai has been 100% herself.  She is happy, and cranky, eating well, and wants her music.  I can't thank you guys enough for all the Facebook love, or texts, or offers to bring us food in the hospital!  We really felt like you were all right there supporting us!  And as usual, all your prayers pulled our peanut through this. 
Aye, this kid.  What is she made of??



  1. Tough little peanut what a fighter you are sweetie .this will be one great Christmas we love u sweetie ,your on a prayer chain world wide from our friends in Flordia
    Love you sweetie
    Aunt Barb,Uncle Dean

  2. Thank you for taking the time to post an update. You must be exhausted, mentally and physically. Our thoughts and prayers are always with your whole family. Enjoy the holidays.
    Uncle Dave and Aunt Kathy