Tuesday, February 4, 2014

What's next?

We're back home.  Thankfully!  We'll be headed back to CHOC in a couple of weeks though.

Last Wednesday was Riley's bronchoscopy/laryngoscopy.  This procedure was checking her upper airway as it hasn't been looked at since she got her trach.  If you recall we've had several pressure tests done on her trach and they have always come back high.  That was the first indication that there was probably some sort of scar tissue in her airway, from the trach, but we were holding out hope that it was because her airway was still under developed.

Riley's ENT had agreed to not do any "major" removal of scar tissue if that is what he found.  Mainly because we are trying to avoid any type of hospital stay right now.  He stuck to that promise but, did find a granuloma above where her trach sits in her airway.

Because Riley now has a Cochlear Implant he is unable to use certain tools during surgery.  The granuloma is also hard which made it difficult for him to cut it out.  They ended up having to intubate Riley as the doctor wasn't able to get to the granuloma like he normally would.  Good news, if there is such a thing when talking about your child's airway, is that if she ever needs to be intubated it can be done through her mouth.  Remember we want to always have a way to keep Riley's airway open especially in case of an emergency.

While in the OR the doctor injected a steroid in to the site which will hopefully loosen the granuloma and make it much easier to remove during the next procedure.  If not they will need to cut in to Riley's stoma site to make the removal.

Because of everything that went on in the OR they decided to keep Riley overnight.  Believe me I tried everything to get them to release us but, when the ENT and anesthesiologist want your child to stay it's best to take their advice.

Riley is doing fine.  She rested overnight and we were able to come home on Thursday.  We'll schedule the procedure again in a few weeks and hope that it goes smoothly.  Her doctor will know what to expect when he gets in the OR this time so as long as everything goes as planned it shouldn't be too terrible of a procedure.

Friday we got back to "normal".  Riley had therapy and Logan had his first Tball practice.  I've been waiting for Logan to start baseball for what seems like forever!  We have a feeling he is really going to enjoy it and Dave has enjoyed being at the practices and helping out the coaches.
Back at therapy!

Tball time!

Sunday we had Hans, Tia T, Uncle Mike and Mia over.  Mia is obsessed with Riley. In a wonderful way.  In a way that often makes me wonder what Riley is thinking as Mia is running in and out of her room.  From the moment she walks in the door she is saying "Ry Ry, Ry Ry" over and over again.  It is SO good for Riley to have the interaction with Mia.  She gets a ton of play time with Mason and Logan but, being able to be around her peers is great for her.  And Sunday was the first time Riley had her "ear" on, as I like to call her CI, when Mia was around.  Being able to "hear" familiar sounds is something we hope will help Riley to recall and recognize sounds that were familiar to her in the past.  We know it's helped her with just our immediate family and the difference in Riley's mood and the facial expressions that have come back to life as a result are priceless.
Ready to cheer on Pete! and the Seahawks

Riley's smile.  She LOVES her big bro

Our 3 blessings

Play with me Ry Ry

Ry Ry

Today Riley went on a walk with Grammie and Mason and her nurse.  My mom helps us out on Tuesday and Thursdays and Mason always looks forward to his walks!  We've been trying to get Riley out and about more with trips to Logan's Tball practice, the park and out to get fresh air.  I know Mason loved having his sissy at the park to show off for today.  And I'm pretty sure Grammie enjoyed it as well :)
Hanging out at the park with Grammie!


We continue to be reminded of what a wonderful support system we have cheering us on through the good, the bad and the okay days and we thank you all for that.  One day at a time, one foot in front of the other, we Fight On!

Dave, Megan, Logan, Mason and Courageous Riley!

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