Riley Update 1/3/13

Riley is doing ok. She's responding more and more to stimulation and opens her eyes ever so slightly here and there. Her seizure medication dose has been lowered so she is "waking up" and becoming more agitated at the ventilator and has started bucking it. A new term I've leraned.

I've tried to take notes during rounds and after every doctor visits the room but, sometimes it's so much information I just can't keep up. You'll have to bear with me if you're in the medical field or know about what I'm referring to because I may not get all the terms, exact wording right the first time!

During rounds there is talk about her vitals, sodium levels, lab cultures, blood work etc. We have visits from doctors all day long.

Many theories are being thrown around as to why/how this happened and there are many specialists looking at her case daily. The infectious disease doctor has brought a disorder to the table that has piqued my interest. I have this weird feeling he's on to something. Once we have labs back tomorrow I'll share his thoughts. He is also still trying to get test results back from the Los Angeles County Health Department as that is where Pomona Valley sent her samples. He's getting annoyed at the time it's taking and half joked about sending us to pick it up so they could work on it here. Dave was ready to leave right then and there to get it. The lack of urgency from the LACHD is frustrating especiallly when they called to ask me some questions today. I told them to call back. I wanted to tell them to figure out what the hell my daughter has before, someone not providing her actual care, asks me about her health history, family life, immunizations etc. I wanted to tell them to shove it but, instead they are supposed to call back tomorrow. Don't think I'll answer that call :)

Riley's care here at CHOC is amazing. We've had some nurses that I want to keep by her side forever! Our day nurse the last two days has been such a blessing. She has the touch to wake Riley up, encourages us to do certain things with Riley and shares reports openly with us as they come in. She also thoroughly explains what is being done and why and answers ANY questions we have.

Dr. Anas (the head of the PICU) authorized a big girl bed for Riley today. He mentioned the fact that we could hold her once she was off the vent and I bawled. We don't know when that will be. He then paused and said let's bring in a bed so you can get closer to her, lay down with her and touch her more easily. 30 minutes later she was in a bigger bed.

Riley's HR seems to do much better when she is laying on her stomach. Daddy and Uncle Scott had a contest today to see who could get her HR the lowest with gentle back massage along her spine. I wasn't here but, I think Daddy was the winner.

Riley has had some issues with her lungs due to lack of movement and as a result has her very own vibrator. It became the joke today amongst everyone in the room including Riley's nurse and I think we all needed a good laugh.

For now we've heard two teams talk about when we take our baby home. That was HUGE! This is the first time ANYONE has talked that far in the future.

Riley's pupil responses have improved, she's wiggling around and peaking out of those beautiful eyes at us even with a slight glare after her nurse suctioned her boogies. Riley did not like it and then promptly pooped on her.

They're still working on her sodium levels but, with some medication changes tonight we hope those will be better in the morning.

For now, I'm going to go. It's been a long day and I know it will be a restless night as every beep in this room makes me want to jump.

Thanks for your continued prayers. Riley needs them and is fighting as hard as she can.

Love,
Dave, Megan, Logan, Mason and courageous Riley.