Monday, July 29, 2013

A little setback

I really try to focus on the things that happen in our life and look at them as though they happen for a reason.  What that reason is really isn't always visible at first.

Last Wednesday I decided to keep Riley home from PT.  She just wasn't feeling well.  I think it was a combination of her 2 shots on Monday and the family cold that she was coming down with.  I was really hoping that by letting her rest she'd kick whatever it was that was bugging her and we'd be ready for Thursdays MRI.

Thursday morning I could tell Riley still wasn't feeling the greatest and we postponed her Visual Stim therapy.  As I told Riley's nurse Thursday morning, I just wanted to make it through the MRI that afternoon.  The days leading up to the MRI were stressful and I was a nervous wreck.  Not about the actual procedure but, what the MRI would tell us.  Would the MRI reveal that Riley wasn't a candidate for cochlear implants?  Would the MRI show us permanent brain damage that we were unaware of up until now?  Trust me my mind had played games with me all week wondering about the what ifs?

Our usual routine for Riley's therapies and doctors appointments is that I take Riley along with a nurse and Dave usually stays behind to work and be available for the boys.  For some reason he felt the need to come to Thursdays MRI and made the call last minute to come.  Little did we know how important it would be to have Dave along as well!  We discussed braving the appointment by ourselves and going without a nurse but, something told me it wasn't the best time to do that.  So we loaded the car up and kept Riley's O2 tank right beside her "just in case".

We barely made it on to the freeway when Riley started having a coughing attack and was barely able to catch her breath.  It was a different type of cough and something we were not used to hearing from her.  As she started to dsat down in to the low 80's we knew she was in respiratory distress.  After putting the oxygen on her it wasn't helping her as much as it should have.

The entire 25 minute ride was filled with coughing spells and frequent checks on her O2 levels.  As we neared the exit for CHOC Dave and I looked at each other and knew we would not be headed to the MRI but, rather the ER.

Thankfully, the brand new CHOC ER is right next to the main entrance so we just turned in the other driveway and unloaded right in front of the ER entrance.  Since Riley's records are all in the CHOC system it took all of 2 minutes to get her checked in and then they whisked us away to a room.  I think there was a team of at least 12 people including the attending doctor in her room within 5 minutes of us walking through the door.

As they assessed Riley we answered the 100's of questions the nurses and doctor were throwing at us.  They quickly changed her trach and had O2 and monitors on her in no time.  Because of her trach we have to be really careful that it doesn't get clogged or infected.  They did find that she had an ear infection in her left ear but, they didn't think that would cause the type of respiratory distress she was having.  They decided to run a series of blood and urine tests and took a swab of the mucus from her trach to have that tested as well.  Poor Riley just looked so sad and sick.  We knew she was in good hands though.

Once Riley was settled in I decided to take Trudy, Riley's nurse, back to our house so she could head home.  Her shift was ending and there was no reason for us all to be sitting around the waiting room for hours.  I also had a feeling that Riley would most likely be staying overnight so it was the perfect opportunity to go home and grab some clothes for Riley and overnight stuff for Dave.

As we got closer to home Dave called and confirmed my suspicions that Riley would in fact be admitted for observation overnight.  While we were sad we were also grateful that we were at CHOC and not Pomona (we try to avoid that place as much as possible).  The ER called over to the radiology department and cancelled Riley's MRI and we started to hope and pray that this wasn't something more serious for Miss Riley.

I got back to CHOC about an hour later and Dave and Riley were hanging out waiting for a room to become available on the floors.  One of Riley's wonderful RT's from our days in the PICU had come by and even though we'd love to not have to see her at work ever again it was a nice visit from one of the most caring, thoughtful individuals we had the pleasure of meeting at CHOC.  She had walked Dave and I through some tough crap when Riley was in the PICU.  CHOC needs more people like Devin (and Debbie and Bryce)!

We were finally able to get a room around 6:30 on the 5th floor.  Thankfully, we had a private room as they put Riley in isolation.  Isolation doesn't even bug us anymore.  It's for the safety of the patients and staff as well as Riley and we appreciate the precautions the staff takes to protect everyone.  We were still waiting though for the tests to come back when the RN getting us situated informed us that Riley's trach swab was growing something.  Boo! 

I left to head back home to the boys and Dave hunkered down for the night with Riley.  It's funny but, we both noticed how relaxed and alert and calm Riley was.  Maybe it was the one on one time with both mommy and daddy?  No strangers by her side and lots of hand holding and back rubs from the two people that love her more then words can explain.  Amidst the chaos Riley looked like a normal almost 17 month little girl.  It seems these episodes that take us a few steps back tend to catapult Riley 10 steps forward.  The hidden blessing.

Dave and Riley hardly slept Thursday night and Riley did a ton of looking around the room trying to figure out where the heck they were.  The 5th floor is much different then the 6th floor.  And maybe just maybe that was good for all of us.  Instead of the familiarity and fear that the 6th floor induces we were all able to take a break and rest.

Friday morning Dave had an important job to get started  so Grandpa Hopper met Dave bright and early to stay with Riley until I could get there mid morning.  We were told the doctors were rounding around 10/1030 so I was hoping I'd make it back in time to talk to them.  I arrived and waited and waited and waited.  If we've learned one thing over the course of the last 7 months it is that you have to be persistent and vocal in the hospital otherwise you can sit for hours without talking to the right people.

As the clock approached noon we started to bug our nurse to get the doctor in to talk to us.  It took a few discussions with him as to why we wanted to see the doctor and hopefully sped up the process.  Riley was doing okay and stable.  She was on a round of antibiotics and nothing that was life threatening had come from her tests so we really felt we needed to get Riley home.  It was a Friday afternoon and in a hospital if you are still around Friday night the chances that you'll be there through the weekend are pretty high.

We met with the attending pediatrician.  Very nice man who had a cochlear implant.  We had never met him before but, he was very sweet and gentle with Riley and listened to our concerns about wanting to take her home and not just sit around the hospital.  Since Riley wasn't in critical condition we really felt she would to better at home.  After he agreed with us I randomly asked him if he had his own practice and unfortunately, he doesn't.  I was really hoping that maybe I had found someone who would get Riley if she did in fact end up with cochlear implants.  When he walked out of the room I smiled.  It may sound silly but, having these people placed around us that have accomplished amazing things themselves with a disability is really reassuring.  I needed a reminder that Riley can do anything she sets her little mind to.  Especially after what we had been through the past 24 hours!  And as I told Riley, maybe you'll be a pediatrician one day helping kids just like you.  One can hope and dream and believe and Dr. Armstrong reminded me to do just that.

After meeting with the pulmonologist we were given the okay to go home but, told we had to cancel this mornings sedated hearing test and follow up with Riley's pediatrician and pulmonologist before we could proceed with the test.  I worked so hard to get these things going so that we could make sure we kept options available for Riley and now we're back to square one.  While, I am bummed I am thankful that when Riley really needed to be seen we were in the right place at the right time to take her to where she is  most comfortable and gets the best care.  And I am thankful we got her there when we did.  Had we not been on our way to the MRI we probably would have been watching Riley at home and letting her rest but, who knows what her cold would have turned in to. 

Early Saturday morning Dave left to head out of town for the night after having to postpone his trip by a day.  I was really happy he could still go.  We all need a break every once and a while and Dave had really been looking forward to this weekend. 

Riley was able to get a good night's sleep on Friday and was definitely happy to be back at home.  She's still not feeling the greatest but, I think she's on the road to feeling much better.

Since Riley was in good hands I got the boys ready and we headed out for some back to school shopping for Logan and some mommy/son time.  Logan calls these "dates". Those two are quite the pair but, we had a nice lunch together and after having Logan thank me a million times for taking them out I knew it was all worth it.

Yesterday our babies turned 17 months old.  It's hard to believe.  I feel like just yesterday we were loading up the car to head to the hospital and complete our little family.  Mason is growing and growing and changing everyday.  He talks his Mason speak all day long and follows his brother around wanting to do whatever it is he's doing.  He's all boy and has no fear!  Some of his favorite words are cheese, trash, outside, sissy, sippy and no.  He's very animated and loves to say hi to strangers and get people's attention.  Riley is growing and changing as well.  A doctor this past weekend made the comment that she was getting chubby.  And I was thrilled.  She's filling out and starting to really show us how she feels.  If she doesn't like something she is pushing people out of her way and showing us through her actions what she means.  We're proud of her and how far she has come.  I can't believe they'll be 1/2 of the way to 2 next month!

For now we'll keep Riley resting and just take things day by day.  Hopefully, the antibiotics and breathing treatments Riley is on will help her to kick whatever it is that she's come down with.  We're still waiting for the culture results and as of this morning they hadn't been loaded in the system.

Thank you for all of your concern for our little girl.  She really knows how to keep us on our toes.  I know this won't be the last time she ends up in the hospital but, we are thankful that this stay wasn't something more serious.

Fight On!

Dave, Megan, Logan, Mason and Courageous Riley!


  1. Your optimism is such a gift to Riley and an inspiration to me personally. You are one tough cookie, Ms. Megan, and we all love you very much. Fight on.

    Love, Cindy, Dr.M and all the girls

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