"Raising Kerstin"

Maybe I should say "Raising Mattisa", I'm growing each day, learning new things...and yes, I am pulling that title from the movie "Raising Helen".  Not many similarities but I thought it would be a great topic, especially after this past week. 

Kerstin was admitted to the hospital on Tuesday night!  I could not believe what was happening!  Monday night she started sneezing quite a bit, Tuesday was full blown congestion, then around 7 p.m. she's warm, temp was 99...frantically I give her a fever reducer.  I know what comes with her fevers, I wanted to stop that.  It did NOT work, she started having a seizure that came with vomit (hopefully you're not reading this while eating).  The seizure did not last long, it was 3 minutes, which is an eternity when it's your child. 

So, we continue to go through the nightly routine.  I was about to start Kerstin's continuous feedings when she becomes fully involved in yet another seizure and this time, it seemed like there was no stopping this one.  I called my sister for reinforcements on administering the Diastat while she's completely involved, this was 4 minutes into the seizures.  She gave the okay but, before I knew it she was also at my home, to assist, along with other sisters and even my mom!  I'm so thankful for that!  

Twelve minutes after the Diastat was given, Kerstin was still seizing and her temp, taken behind her ear, was reading 106.3, I said, "this can't be right!"  A rectal temp was taken and it read 104.1!!  Kerstin's neurologist was called and the on call doctor said she needed to get to a hospital ASAP since the Diastat was not working and her temp was extremely high.  

We arrive at the ER, vitals were checked and her temp was still a very hot 104.1.  This had never happened, where her temp continued to rise or stayed high, even after a fever reducer was given.  Nor, had she continued to have seizures especially after having the Diastat.  

Making a long ordeal short, Kerstin had a cloudy x-ray, showing early pneumonia, causing her to be put on oxygen.  Her Keppra levels were not at a range her neurologist thought it should be.  In order to control seizures, the meds have to be present in her blood and apparently the level was too low to keep the seizures at bay. So, you guessed it, that was increased, the dosage is now 
doubled. 

Kerstin is home once again, thankfully.  She has quite a few follow up appointments coming up.  The story of our life!

Kerstin must have known she would be going home this day, she slept so peacefully!

It is always good to know that there are so many people that care, one of her former teachers (adoptive grandma and great friend) sent this card to her the day she came home!

More to come...

Easter Sunday

We had a very unexpected turn in our Easter weekend plans.  On Saturday we had a nice day out, my princess, her best friend/cousin and I went to the movies to see Rio.  Awesome movie by the way.  Afterwards we did a little shopping to finish up with the holiday weekend meal. Came home still having a decent Saturday, until late that night!!

She had fallen to sleep around 8 that evening and was back awake around 10, I thought it was kind of strange that she would wake back up after the day we had.  So, I was busy cooking and making preparations for Sunday, doing my hair, laundry and other "mommy" things!  I walked into the room to check on her around 11:30 pm and she was looking at me in such a spaced out way, and she had lots of drool coming from her mouth...I had the gut feeling that my princess was having a seizure, I tried to get her attention and she kind of turned her head and was just staring at the ceiling then her eye started to twitch.  I called one of my sisters to let her know that my princess was having a very involved seizure.  Before I knew it she had two aunts in the house with help, for moral support and thank God, one is a nurse.

The first seizure only lasted about 3 minutes, then my baby started seizing again.  Another short one, my nurse sister called the neurologist to let them know that she was involved and having "clustering seizures", I had never read up on that or heard of it until she mentioned it to the doctor.  For the first time since my baby had been diagnosed with epilepsy and being on a seizure medicine, Topamax and was weened off, then just this past March being place on another, Zonegran, had her Diastat had to be administered in our home.  That was done around 12:30 am.  I was so devastated and knew I could NOT let her see the hurt and frustration in my eyes. Its amazing how a child knows MOM so well that they can tell its something going on without her uttering a word. She fell asleep shortly afterwards, but still had some activity, even while the drug was been given.  This mom couldn't fall asleep until 3:30 am, for watching her princess!

Needless to say, she was home from school today, still kind of groggy and drowsy from the Diastat coupled with the Zonegran.  We got a call today from the nurse at her neurologists office to see how she was doing and to let us know that per doctor's orders the one per night capsule ( opened, taken with ice cream, smoothie, whatever works )  has been upped to two.  I told her that its already hard to get her to take one, now we have to war over two.

As always, we will press our way through this too!

More to come...