Monday, September 23, 2013

The good... the bad... and the ugly

So the good news is that Miss Riley DOES NOT need a shunt.  The entire probe experience really wasn't all that bad.  Riley was a champ and took it all very well.
It was an early morning!  Riley's look says how we all felt!
Pretty piggies pre probe.

We were at CHOC very early Thursday morning and the procedure took less then 45 mins from start to finish.  We were a little shocked when we went back to the recovery room to see the giant probe coming out of her head.  I was envisioning a small thing.  We nicknamed Riley the unicorn while she had the probe in.  The actual size of the probe was teeny tiny but, the entire machine was much bigger!
What is this thing???  We were promised that it did not hurt.  It just looked SO uncomfy!
REsting in the PICU.  The machine to the right monitored her pressure.

Riley was monitored on the PICU floor.  It was nice to be in a familiar environment and NOT be in a life/death situation.  Because really that is when you end up in the PICU.  It was a gentle reminder of how far we have come and also a reminder to count our blessings and be thankful for many things.  I've said it before but, you just don't talk to other parents when you are in the PICU.  It's sort of an unspoken rule.  Dave did speak with a mom (as she engaged him) who has a son that has leukemia and came down with the flesh eating bacteria after receiving a cut on his leg.  He's been in the PICU for 3 months fighting for his life.  We remember how it felt to be in the trenches praying for a miracle and my heart aches for all of the parents standing beside their children praying, hoping and waiting.

The PICU is home to some of the sweetest nurses.  We've met many and really they are all angels.  They remembered Miss Riley and some of them came by to peak in on Riley and see how big she is getting.  As one of the attending doctors said to a group of med students during rounds on Friday, when Riley arrived in the PICU she was on deaths door.  No one really knew what her outcome would be and if she would make it out of the PICU.  Often times once a patient leaves the floor they don't know what happens to them.  He was impressed with her progress and reminded Dave as he has said many times before.  It just takes time.  Dave promised him that in a few years Riley will come back to visit and whether she's walking with a limp, a cane or a walker she will walk on to the floor to say thank you.  It's what we often dream of being able to take Miss Riley to do.

Friday evening the neurosurgeon rounded and decided that the levels that Riley had from the pressure test were normal and that the probe could come out.  He seemed shocked.  Heck I still am.  And something tells me that even if she doesn't need the shunt now she'll probably end up with one at some point in the future.  Just a feeling that I have.
No more probe.  A few stiches and a tiny bald spot.
Finally a bath!

The bad or rather sad to me part of all of this is that Riley still has fluid on her brain that is taking up areas of dead brain tissue, hydrocephalus ex vacuo.  We've known this for a while, doesn't make it any easier.  The only thing I can say and something that has been repeated to us over and over again is that the young brain has plasticity and even if these "dead" areas exist (which they do) it doesn't mean another part of Riley's brain can't pick up the slack.  Even now as Riley is rolling from side to side, holding her head up, engaging in cartoons, interacting with her brothers and reaching for toys or her mobile we know she's reconnecting.  It's as if you can slowly see the lights turning on.  It can happen and it does.  "It just takes time....."  

Since we were already inpatient and had a bunch of time to kill we had the pulmonologist that was rounding this weekend come by to check on the pressure in Riley's trach.  It was on the recommendation of the trach nurse, who is so so helpful, and I am happy we did.  Riley has not been able to use her passy valve (allows Riley to make audible sounds and talk) and it's something that is important to us to be able to put back on.  But, the pressure (or air passing around the trach) needs to be at a certain level for this to happen.  When the RT's tested Riley the pressure again was way too high.  As a result it was recomended that we have a bronchoscpy sooner rather then later to check to see if there are any granulomas (scar tissue).  So we'll head back to the pulmonologist on Friday to have this checked out.

We were able to come home Saturday mid morning and I know Riley was happy to be back home!
Sleepy girl ready to go home!

While all of this was going on I was in email contact with the doctor and audiologist at House.  Saturday evening I received an email that I was hoping would never come.  For one reason or another the doctors and team at House don't believe that CHLA is the place to have the cochlear implants done.  I'm pretty upset about this and believe there may be other underlying reasons why this is the case.  Which is most likely fueling my frustration.  It's times like these that you realize that no matter how on top of things you are, no matter how diligent you are are about paperwork and the overall process it doesn't guarantee anything.  And I feel duped.  We're basically back at square one.  Yes, we knew this was a possibility but, it doesn't even appear that Riley's case was presented to CHLA which means we wasted weeks waiting for an answer.  But hey it's not their child so I guess I can see why the urgency and importance just isn't there.  In all honesty I'm kicking myself for even making the move to go there as my next phone call today will be back to the audiologist at Providence to see where we go from here.  We'll have a letter from the doctor at House (whoop dee doo) that we can use to help move forward with an eventual surgery but.... we've now lost tons of precious time.  Sometimes all of these hurdles really get to me.  Now, I just hope that we don't have to re do any of the exams (MRI, sedated ABR) and that based off of what we have so far we can still move forward ASAP.  We'll see. 

We're back to the "norm" this week and Riley will be back in therapies and working as much as she can.  In between the craziness of the week I hope to finalize plans for Logan's 5th birthday party in a couple weeks.  It has sort of snuck up on me!

Thank you for continuing to think of us and support us through the good, bad and the ugly!  If it's not one thing it's another these days but, like I always tell people, we've learned to just take things one day at a time!

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

1 comment:

  1. u never fail to amaze me, Megan. Just when i think God is testing me with challenges here in Arizona i am reminded of your strong faith and perseverance. i commend you!