Friday, April 19, 2013


It all started early this morning during the shift change with Riley's nurses.  Apparently, overnight, Riley had an episode of dropping her heart rate in to the low 60's.  Pretty unheard of for Riley.  While the nurses were giving report she did it again and our day nurse immediately listened to Riley heart and heard an arrhythmia.  She immediately said we needed to go to the ER and Dave came and woke me up.  It was early and I felt like we were back to day 1.

We made the call to go back to the original ER we had gone to only because it was rush hour and Riley was having heart issues.  We didn't want to risk driving in traffic back to the new CHOC ER.

While in the ER she had a few more of these episodes and was given medications to stabilize her.  It worked for a while but, then she needed more of the medicine.  A CT scan was done and the attending doctor came to tell us he thought Riley had hydrocephalus:

Hydrocephalus seen on a CT scan of the brain.
ICD-10G91, Q03
ICD-9331.3, 331.4, 741.0, 742.3
Hydrocephalus (pron.: /ˌhdrɵˈsɛfələs/), also known as "water on the brain," is a medical condition in which there is an abnormal accumulation of cerebrospinal fluid (CSF) in the ventricles, or cavities, of the brain. This may cause increased intracranial pressure inside the skull and progressive enlargement of the head, convulsion, tunnel vision, and mental disability. Hydrocephalus can also cause death. The name derives from the Greek words ὑδρο- (hydro-) "water", and κέφαλος (kephalos) "head".

 Ok....   So we requested transfer to CHOC which Dave had already called to see how to speed up the process.  At this point we were numb.  We were sitting with the same nurse from 12/27 who NEVER left Riley's side the entire time we were there.  Coincidentally, she told me about calling to check on Riley mid January at CHOC and a story about her sister that I will share another time.  Nurses are amazing if you all don't know already.  She kept telling me Riley will be ok.  Over and over as I cried and cried.

We prepared to transfer to CHOC and waited impatiently for the transport team.  They arrived and the nurse let us know that Dr. Doom would be seeing Riley once admitted.   We promptly asked for any other neurosurgeon.  Dr. Doom is not someone we wanted to see again especially right now.

Riley went with the transport team and Dave accompanied her while I followed in the car.  As soon as we were settled back in the PICU one of the other neurosurgeons came in, felt Riley's head and declared she had been misdiagnosed.  Cue deep breathes.   However, he was a jerk and may or may not have caused me to be a tad flippant and share some not so nice words about neurosurgeons in general with the nurses.  I believe I may start to advocate for bedside manner 101 classes for all pediatric neurosurgeons.  He tried to make nice after but, I am pretty sure he doesn't want to run in to Riley's mom anytime soon.  So needless to say Dave and I both have neurosurgeons we are not so fond of!

So with another "mis diagnosis" but, still a dropping hr and arrhythmia everyone is currently stumped. 

Riley is on the PICU again and staying for observation overnight while we wait to see how we proceed from here.

The PICU is so comfortable for us and it was nice to see so many familiar faces and share the new Riley with all of our "friends".  We ran in to the doctor who broke the news to us that Riley wasn't brain dead in the parking garage tonight and she'll be coming by to see Riley tomorrow.

For now, we wait, pray this isn't anything major and believe in our Riley.  She's alert.  Pissed that she has IVs in her hand and foot and has tried to bite off the hand IVs.  Riley's feisty personality is very evident right now and we are happy she is able to express her frustrations even though it's hard to watch.

Riley is in good hands.  She's back with the doctors and nurses we trust.

Thank you for your thoughts and prayers.  Riley needs them as she deals with this setback and we try to figure out where to go from here.

Fight On!

Dave, Megan, Logan, Mason and Courageous Riley!

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