Thursday, September 12, 2013


We're home!  Much to our surprise. 

We met with Riley's main neurologist and another neurologist who we had seen back in January yesterday.  We also met with a neurosurgery resident and the unit pediatrician.  Lots of talking.  Lots of memories of the past.  I can't tell you how badly I wish I had a cheat sheet to hand every doctor we encounter. (And I've mentioned this before so I think this time I really will make one!)  Thankfully, this time, we were placed in the neuro unit.  Makes it much easier to discuss meds, disposition etc. when the nurses deal with similar patients all the time!

We were supposed to have a follow up visit with Riley's neurologist today (if life had proceeded as planned).  We were expecting a med adjustment.  Riley has grown.  She's longer, heavier and older.  Little did we know that Riley would dictate to us when she was ready to have her meds adjusted.  It appears the seizures were to be expected.  It wasn't if they would occur but, when.  Makes you feel real secure as a parent.....

I had a feeling this was coming.  I had planned to be out of town last weekend but, cut it short by one night because Riley's neuro stats were concerning.   Her seizure activity had steadily increased and although they were "little" seizures they were still seizures.  I've read of cases where seizures in CP patients get out of control and there in no turning back.  Deep down I was sick thinking about this possibility.
Riley rolled in to this sleeping position and got comfy so that.....
She could take a nap looking at daddy yesterday!
Infection wise Riley was cleared.  Although our discharge paperwork noted pneumonia. (Have to love hospital billing shenanigans)  She did have a heavy dose of antibiotics but, did not exhibit any symptoms of infection other then the seizures.  And her lungs are clear.  All good things.
Listening to sissy's ?? heart, stomach?  Logan loved the stethoscope the nurse gave him!

We were told we would be going home today.  Grandpa Hopper came down yesterday afternoon so I could head home to get some clothes and see the boys before staying with Riley.  On my way home, in traffic, I called Dave to make sure he checked with the nurse before he left to see if the neurosurgeon would be coming by.  Well, not too long after the resident came by and said we were ready to go home.  We were not prepared!  Riley had been seizure free for 24ish hours and they would not be rushing the brain pressure probe.  So we will go back next week for a 48 hour study as an inpatient, again.  At least we'll be ready for this hospital stay!

Since I was already home I was able to grab what we needed to bring Riley home and a carpool buddy, Logan.  We had a little snafu on the freeway when a car seat strap was somehow caught in the door and got tied up in my tire.  Thought we had blown a tire but, no just tore the new leather in my car.  We were both pretty shaken before we got back to the hospital.  It was just one of those days.

Riley is stable.  Sleepy though.  Her phenobarbital has been upped and we have new procedures for seizures.  Her phenobarbital levels are higher then they have ever been and should ward off any seizures.  Thank goodness.  We expect Riley to be sleepy as she adjusts to this new dosage but, we're still proceeding with therapies and daily routine.  Riley needs it!

We had an interesting discussion with the trach nurse who first explained to us what Riley's trach would entail and how it would function as she always checks in on us when we are inpatient.  She was surprised we aren't there more..... Uh yeah, no thanks.  Although it was a reminder that hospital stays are an inevitable part of Riley's life.  It also made me think about the upcoming flu season.  We're super vigilant about germs and cleaning and hand washing so I suppose we are going to have to be even better about it.  It's hard to control germs when you have nursing care 24/7 (many different people in and out of your house) and a child in Kindergarten (the germ factory as we like to call it).  So we'll proceed with caution for the next few months.  Unfortunately, any little cold or temperature can trigger a seizure for Riley if we're not careful.

Thank you for the prayers. support, thoughts and love. They really do work! It makes this journey much easier to know that others care about our family and Miss Riley.

We're happy to be home.  Logan cheered when he heard Riley was coming home last tonight and I know we all slept much better under the same roof.   We're mentally, physically and emotionally exhausted.

Just because, a couple pictures from the day before Riley headed to the hospital.  Mason REALLY missed Riley.  He kept walking in her room wondering where she was.  In some ways the older Mason gets the harder this all gets.  He understands much more then he did 9 months ago.
He LOVES his sissy!
The bond these two share is still strong!
We're so lucky and blessed with all of you and an amazing family that steps up whenever these situations arise.  It's goes without saying that it doesn't matter how old you are you always need your mom.  I know I've mentioned it before but, my mom is Super Grammie and comes to our rescue whenever she's needed, rearranging her schedule and going with the flow when it comes to the boys and their activities and craziness! 

We can also always count on Grandpa and Grandma Hopper to step in whenever they are needed and at a moments notice!  It makes this all a little easier to take with such wonderful support surrounding us.
Thank you Grammie and Pa Doug and thank you Grandpa and Grandma Hopper!  We couldn't get through these hiccups without you! 

Fight On!

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

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