Friday, April 18, 2014

Happy to be back home!

Leave it Riley to keep us on our toes and remind us that life is still so unpredictable.

Wednesday evening Riley spiked a temperature and had a red rash around her trach site that was spreading rather rapidly.  I called her ENT's office and had a return call within minutes from the doctor.  After he spoke with Riley's nurse he was concerned about her developing cellulitis.

So Riley, Dave and Riley's nurse loaded up the car and headed to the CHOC ER to have Riley checked out.  They ended up starting an IV and antibiotics as the symptoms Riley had definitely pointed to signs of an infection.  They also kept Riley overnight to keep an eye on her and administer more of the antibiotics through the IV.

We're still waiting to hear back regarding the culture that was done but, we're happy to say that we are home now and Riley is continuing on antibiotics for the next 10 days to clear up whatever was going on.  Discharge paperwork states that it was cellulitis although there is some confusion as to whether it was just tracheitis.  Regardless of the diagnosis Riley is on the mend!

I truly believe that is was because of the fast actions on Riley's nurses part in recognizing that something was "different" that we were able to get in to the hospital, get meds and get back home as quickly as we did.  For Riley, any little infection can turn in to something much bigger in a matter of hours if it goes unnoticed.
Ready to head home!

Having Riley back home to recover is the answer to our prayers.  Spending another Easter separated would have been heart breaking to all of us.  Especially to Logan and Mason who have been looking forward to all of the activities and gatherings we have planned.  I'm thankful my boys love their sissy so much.

Before our eventful night on Wednesday Riley had been doing well.  She's still having seizures here and there and her medications have been upped again to try and better control them.  It's possible that the seizures are happening because of the infection brewing and a cold that has lingered around longer then usual.  At least that is our hope.  Next Thursday Riley will have an EEG to check on what's going on in her brain and we hope to have more answers then.  EEG's spike my anxiety and I am not looking forward to the actual test but, it will hopefully provide us with some answers and perhaps show us some improvement since the last EEG.

We've been busy with activities and life.  The weather has been hot and then cold again so we've been trying to take advantage of the nice weather with trips to the park and outside activities.  Logan has been doing really well in Tball and has received the game ball twice this season.  It's been fun to watch the kids all improve and start to understand the game a little more.

Cooling off

Watching her brothers be crazy!

Slide fun!

Riley had her first visit to the dentist last week and got a 100% on her "exam".  I was able to find a pediatric dentist close to home who sees special needs patients.  He has privileges at CHLA which is fantastic just in case Riley needs any procedures done in the future in the OR.  The medications Riley takes can cause her gums to grow over her teeth and of course we worry about tarter becoming loose and Riley aspirating it so it was nice to get a clean bill of health!

This week Mason had grandparents Day at preschool.  Grandpa Hopper, Grandma Hopper and Grammie were able to attend and Mason has asked about the bubbles that they played with everyday since Tuesday.  We're happy that he is adjusting so well to "school" and feel confident that our decision to send him a couple of times a week was a good one.
Hanging out with Grandpa Hopper

Bubbles with Grammie and Grandma Hopper

Mason and Logan also had their Easter parties yesterday.  Due to not knowing if/when Riley would be discharged we had to rearrange our original plans.  I was able to be at Logan's school for the egg hunt and then Logan got to leave early with me to pick Riley up.
Waiting to get some eggs!

Logan being able to see Riley in the hospital environment and be a part of bringing her home really helped to ease his fears about Riley being "sick" and back in the hospital.  He understands much more of what is going on with Riley and worries so much about her when she is not at home.
Hanging out with sissy

We hope you all have a wonderful Easter weekend.  We are looking forward to time with family and friends.   We'll hopefully squeeze in a visit to the bunny tomorrow which I am sure will leave us with a priceless picture of our trio.

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

1 comment: