Riley update

Today started out very normal.  I was editing my post with updates on our visit to the neurosurgeon yesterday when I received a text from Riley's nurse that Riley had a seizure.  Followed by a longer seizure.  Ativan was given and I placed a call to Riley's neurologist's office.  Something just worried me this time.

A couple of hours later I received another text.  Another seizure.  If this happens we give Riley a stronger Ativan like drug (Diastat) rectally and head to the ER per the neurologists instructions. (We've never had to give her this until today)  I had discussed with Dave after the first incident that if any other seizures occurred today we would head to the ER.  So we were semi prepared but, hoping we didn't have to.  These seizures have started to come more frequently and suddenly.

We got to the CHOC ER in record time.  Riley's nurse even timed it and was impressed.  I promise I wasn't speeding!

We got checked in started going over the normal questions and got settled.  And then Riley had another seizure.  Thankfully, the attending ER doctor was able to come in to witness it and I had already spoken with Riley's neurologist so she was able to work with him on what now.....

It was pretty evident at this point we'd be admitted.

Yesterday at the neurosurgeon we had agreed to do a brain pressure study for 48 hours next week as an inpatient at CHOC.  Now, I am hoping this can be done now.  It's silly to me to wait a week.

Riley did show some sort of infection on her xray.  Pneumonia and sepsis have been thrown around.  She recieved a dose of antibiotics and now we wait to see what her cultures show.

I met Dave and Riley back at CHOC after grabbing stuff from home for them and walked in just as Riley had finished another seizure.  Again, witnessed by the resident on the floor.  We went through a zillion questions again and a CT scan was ordered.

Riley was amazing during the scan and we settled back in her room to wait for results.  Riley's feeds were still being withheld so we were unsure whether a surgery would be tonight or not. 

We were both thrilled to be back at CHOC!

I finally headed home when we knew that wouldn't be the case tonight.  The CT scan shows no change from the MRI from 8/7.  In other words it's not an emergency situation that requires someone to be woken up.  (Like a grumpy neurosurgeon :))

So now we wait until the morning to see what's next.

I'm home with the boys and Dave is at the hospital with Riley.  I'd like to say we're used to this by now but, really we're more used to all being home together.

I missed Logan's first back to school night tonight and feel horrible about it.  My mom was a trooper and life saver today when all hell broke loose and my IL's saved the day by relieving her before I could get home.  It truly takes a village.

We'll wait and see what tomorrow morning brings.  For now I am ready to collapse in bed with Logan who has taken it over along with 20 stuffed animals and blankets.

Mommy was much more prepared this time and brought all my goodies!  Including our new Memo quilt!

We appreciate the prayers and support.  Riley is such a trooper.  She was trying to pull off her IV and kicking at the nurse when she was checking on her.  Good to see her feisty but, much harder to keep her happy as a patient when she knows that she's going to be poked and prodded!  She has the fight in her though and will continue to Fight On!

Love,
Dave, Megan, Logan, Mason and Courageous Riley