Tuesday, July 22, 2014

Day 2. Happy surprises, serious discussions and we wait...

Day 2 is almost over and I am emotionally exhausted.

We checked in yesterday morning after an explosive diaper 2 seconds after I posted this happy picture on IG.   

It took gloves and an entire pack of wipes to clean Riley off before we could head in to the hospital!  At least we got a good laugh out of the situation.  Riley was definitely showing us her displeasure about having to go inpatient!

We settled in and Riley was hooked up to the continuous monitoring.  We met with Dr. Tran and the rest of the Keto Team.  They already had Riley's formula ready to go for her 1pm feed so they started her pretty immediately on the 1/2 and 1/2 mixture with her old formula and the new concoction.

For the most part, aside from the million questions, yesterday was a pretty smooth sailing day.

This morning of course was different.

I left to go meet my mom and the boys downstairs when Dr. Tran came  in.  Riley's IS are still there (which we knew) and they are actually progressing (*$*@&#*).  She went over a few things with Dave and promised to come back this afternoon to talk to both of us.

While standing outside our room about a half an hour before I noticed Mike Trout (from the Angels) and a few other players visiting patient rooms.  Trout is Logan's idol.  He loves him and wears the silly Trout hat he got at a game all the time.  So I called my mom and told her to hurry.  It was my mission to get Logan to meet him!  And it was a nice distraction from the stuff happening in the hospital.

The team escorting them around let me know they were headed to the 4th floor playroom so after I met my mom and the boys we headed to the 4th floor.  As the elevator opened the entire group was heading in to the elevator to leave.  The nice lady I met earlier had them get out of the elevator to meet Logan and Mason.  What amazing young men.  Not annoyed, put out at all.  Genuinely sweet and they made Logan's day!  I'm sure these PR trips can be tiresome and yet they posed enthusiastically for a picture with Logan, my mom and Mason.  Logan didn't quite realize who it was until I told him when they were finishing up the picture.  He turned beet red when he realized who he'd met.  Highlight of Logan's day and mine.  Class act all of them!

The boys visited with Riley and we were able to take them to lunch in the cafeteria.  After they left we had a teaching session on how to make Riley's new formula, waited around for Dr. Tran and tried to keep Riley comfy.

We met with Dr. Tran this afternoon.  She reiterated what she had told Dave earlier and we dove in to a long discussion about the future.  At this moment I am numb.  I've had a good long cry on the way home and yet I am at peace.  Does that even make sense?

We're working Riley in to the Ketogenic Diet.  So far, so good.  However what if this doesn't work?  We now know (as I suspected before) that the Sabril IS NOT working.  It takes time for the Keto Diet to really work so for now we are playing the waiting game.  It could take up to 3 months.  But, what if?  What if this doesn't work?  What if Riley requires something more?

We'll be closely monitoring the seizures for the next few weeks as well as heading for an MRI and PET scan in preparation for a possible hemispherectomy. 

I still don't know how I feel about this.  This is all BRAND NEW to me.  While we hope and pray the Keto Diet works I now wonder what benefits a hemispherectomy could have for Riley.  It's also amazing to me how the human brain works.  

Could this be something that helps Riley really thrive long term?  To go from touching and grasping objects to lifting and moving them?  As Dr. Tran explained to us and as simple of an explanation I can give to you is that right now Riley's damaged part of her brain is hindering the healthier parts (aside from the obvious issues the seizures cause as well).  So if by removing the dead part will Riley not have to travel up the 5 across to the 101 and back to the 5 to get to San Francisco?  Will she be able to do something by just traveling up the 5? Will the seizures happening in one part of her brain not transfer to the other side (healthier side)? That's pretty much the comparison we were given.  It's a ton to take in and think about.  But, it's brain surgery.  Brain surgery.
We talked in depth to Dr. Tran and I know she has Riley's best interest in mind.  I know she's on the same page as we are in regards to improving Riley's quality of life.  I know she knows that we are going to give Riley EVERY opportunity to continue to write this story and do it on her terms.  For the first time in a long time I feel like we are working with a doctor who sees the potential we see or at least knows we see it and that we are going to help Riley to build on it.  She understands our determination and is as committed to minimizing and/or getting rid of the seizures as we are.  That is her job but, she is also in my opinion not going to option dope Riley up and see what happens first.  Now this is also one of the last cards that can be played for Riley's seizures.  So what if?  

So my feelings are all mommy feelings.  I hurt for Riley.  I hate that we even have to discuss or consider something like this.  I hate that she is being poked and prodded and having to stay in the hospital when she should be home where her family is.  And for the first time in a long long time I am sad and a bit confused.  Do I ask you all to pray for the surgery?  For the diet to work?  For new meds to work?  For the diet plus meds plus surgery to work?  Right now we just don't know what the best answer or scenario is for Riley.

So for today we are taking all of this information in and regrouping in the morning.  We'll spend another day in the hospital as they monitor how Riley does with the Keto Diet.  And then hopefully home on Thursday to closely watch Riley.

As I told Dr. Tran, Riley is still making progress with these awful seizures.  If we can get rid of them what is her potential?  So many questions today.  So many questions that will not be answered any time soon.

For now, we continue to take this all one day at a time, like we always have.  We believe in Riley.  Have faith in the team that is working to get rid of these seizures and have hope in the future.  Riley is not a typical patient in any way shape or form.  She's our special little miss and we'll figure this out one way or another. Always in Riley's best interest.  Always fighting for the little girl that we love so, so much.

Fight On!
Dave, Megan, Logan, Mason and of course COURAGEOUS Riley!

1 comment:

  1. Wow. I too am amazed at the human body and brain and what can be overcome. Riley is one tough girl. I can't imagine being faced with these decisions and hope that when the time comes you feel confident and at peace with your choice. Wishing Riley and your family all the best!