Tuesday, November 19, 2013

Mondays update!

It's always nice to be home.  There is just something about the hospital that wears us all out!

Riley is doing okay.  She's still a bit sleepy but, is slowly starting to be awake a bit more.  She's on quite the cocktail of meds; phenobarbital, Depakote and the ACTH.  One of those alone can have sleepy side effects so you can imagine what the 3 together make her feel like!

So what is the plan now??? 
We're back to therapies and appointments. 
Therapy on Friday.  A bit sleepy but, still participating!

We'll have Riley's labs drawn weekly to test for various things. We attempted the first draw this AM at CHOC and it was a bust :( most of Riley's veins have been blown over the last week with all of the needle poking! But, my lifesaver "Gina" from the neuro clinic connected us up with a gentleman that is supposed to be fabulous and comes to the house to draw blood!!!  He'll be coming tomorrow morning and we hope he is able to get enough for this week's labs.  She's being titrated off of the ACTH still.  The last dose is the 2nd week of December.  Riley is free of the IS (infantile spasms).  She's still experiencing the electric type seizures according to when she was taken off of the EEG.  But, these shouldn't cause any further damage. Phew....

Today we were back at CHOC early (545am to be exact) for an endoscopy and ph probe placement.  The endoscopy didn't preliminarily show damage from acid reflux.  The ph probe will stay in for 24 hours and monitor the same thing, acid reflux.  Depending on the results of this test we will then decide if we proceed with a fundoplication (nissin) procedure or not.  I was under the impression that a bronchoscopy was also being done this morning.  The reason why we went to the aerodigestive clinic was to have all three specialties (GI, ENT and Pulmonology) in one place at one time and for ease of coordination.  I guess I missed something in there.  Just another one of those things.  So, I've learned my lesson and need to listen more closely when they call to review things for procedures or perhaps get out a medical dictionary so I know what each procedure entails.  I have a call in to the ENT's office to get the bronchoscopy scheduled ASAP.
All dressed up ready to head to CHOC!

Heading back to have her procedure done.

Riley also has a swallow study coming up and follow up appointments with her various doctors.

We're trying to stay very positive and keep pushing forward with everything that Riley needs to have done.  We're also trying to figure out how to fit everything in before the end of the year.  I realized today that Thanksgiving is next week and may have had a bit of a freak out!

This weekend we were able to spend time with Aunt Becky and Uncle Scott (Happy Birthday Aunt Becky!!!!), attend the fabulous USC Homecoming football game(a mommy/daddy date) and visit with Uncle Mike, Tia T and Mia.  It was a busy but, nice weekend.

Some fresh air on Sunday!

Kisses from Mia with crazy Logan in the background.

Kisses for sissy!



Thank you for your support and messages while we were back at CHOC.  We're becoming very familiar with the 5th floor (neuroscience floor) and figure that will be where we will spend most of our time if we ever need to be inpatient.  The pediatricians that work on the floor are amazing.  Professional, kind and encouraging.  The nurses are the same.  And it's nice that they have gotten to "know" Riley's case.  It makes it easier to not have to go through the entire chain of events that got Riley to where she is today with someone new.  The icing on the cake was a phone call from one of the charge nurses and one of our main nurses while inpatient on Friday just to check on Riley.  Who does that????  It really makes you feel like they really do care for your child and care about what they do. 

While we know this won't be our last hospital stay we hope it will be the last stay for a while!  We've been in and out of the hospital now every 2-3 weeks for the last 3 months.  :(  The valet guys even greet me with a "hello Mrs. Hopper".  That to me really shows that we've been there way too much!
Oh and one more thing, if you have a spare prayer or good thought could you send them to the Ross family and Miss Gracie???  I am continually amazed and blown away by the strong faith this family has and I know they'd appreciate it!  They are separated as a family right now while they fight for Miss Grace in Boston.    Keep fighting Gracie doo!!!!

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

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