Friday, July 25, 2014


It's a toss up between Dave and Riley on who was happier to get home yesterday.  Because Dave is an all around amazing daddy and husband he was staying overnight with Riley while we were in the hospital. (something that I just couldn't do this time)  We didn't follow our usual routine where we switch off every night and instead I was home at night with the boys and spent the days at the hospital with Dave and Riley. This trip was much more hectic then usual and as Dave said the days started at 5am and often didn't end until 11 pm or later.  It was exhausting.

The days were crazier then normal because we were switching over all of Riley's meds to Keto friendly, keeping track of her feeds and learning all about the Keto Diet!  Each day we had meetings with the doctors, pharmacist, nutritionist, neuro psych and case manager.  When one would leave the other would come in.

Along with the education that we were getting Riley was also rarely left alone.  Her days started with a blood draw at 5 am and the pokes never seemed to stop.  Her glucose was measured every 4 hours and her urine was tested as well which meant more frequent diaper changes.  Riley really is amazingly strong.  She's been through so much and yet pushes through whatever is thrown at her. 

Dave did catch a picture 2 mornings in a row after her blood draw that summed up how she really felt about the blood draws and pokes!
  (Hopefully, I don't offend anyone by posting this.  If we didn't laugh occasionally we'd go insane and Riley naturally did this twice!)

For now, we wait.  We wait to see if the Keto Diet is going to help make a difference for Riley's seizures.  We were a bit worried when the seizures were increasing while we were inpatient but we think it may have had to do with a drop in her valporic acid levels (Depakote).  Because of the drop she was given an IV boost before we left the hospital yesterday.

We need to give Riley's body time to adjust to the diet, for her ketones to get a bit higher and then we will be able to tell what our next steps will be.

We don't have to decide on any further actions until we make it through the next few weeks and to our follow up in the Keto Clinic on August 14th.

I know that the talk of Hemispherectomy has many concerned.   While it is not something that we want to put Riley through we are confident that if that is the path that we need to go down it will only be for Riley's best interest.  And to improve Riley's quality of life.  It will not be a decision that is made hastily and will take a team of Neurologists and Neurosurgeons to determine if it is something that Riley could benefit from.  While there are many risks associated with the procedure there are also many benefits.  We won't know for a few weeks whether or not this option is still on the table. 

Riley will continue on all of her same meds for now.  We'll begin to wean her off of the Sabril in August.  Because of the severity of the Keto Diet no other changes were made to her meds while we were in the hospital.  Once we wean off of the Sabril and hopefully Phenobarbital shortly thereafter, Riley will start on another seizure med.  Again, this will take time though.  But, there is a plan in place.

We've learned through the last year and a half that our patience will continually be tested.  It's not something you ever get used to but, keeping the faith and being hopeful about the future makes it all much easier to bear. 

So now we're easing back in to therapies and doctor appointments.  We're also looking forward to continuing to enjoy summer and our family time before Logan and Mason head back to school in a month.  Together, like always, we'll be okay.  And we'll continue to Fight On!

Thank you for all of your love, prayers, good thoughts, messages, texts and phone calls.  We couldn't get through the really rough days without all of you!

Dave, Megan, Logan, Mason and Courageous Riley Roo

No comments:

Post a Comment