Miss Riley is resting as I type. She's had a rough couple of days. As far as her medical stats she's doing great but, her awake time has been interrupted by extreme agitation. We're taking this as a good sign that she has the feistyness and fight in her that she needs but, watching her during these periods has been rough. We first spoke with the resident on yesterday afternoon about what we could give her to help her out. Well she really had ZERO advice except to say she could get her some ativan. Problem with the ativan is it makes her much more sleepy than we'd like her to be during the day.
Finally, after I left for the night Dave spoke with the attending and they were able to get her another medicine to calm her down without the sleepy side effect. Dave also found that he could calm her by bicycling her legs. She ends up over extending her extremities while she is agitated and thus causes her legs and arms to stiffen. She doesn't appear to be in pain and her vitals show that as well. From what we can gather and what we've been told her brain is most likely working overtime and the stiff extremities are a sign of that.
We are proceeding with the g tube this week and we are 80% sure about the trach.
We were 100% on board with the trach this morning but, as the day has progressed we've noticed Riley handling her secretions better and so now we're as unsure as we were 3 days ago. We'll have a consult with the ENT team and then go from there.
We've decided that we want to get these procedures done, if they are needed, and then we are ready to move on.
One of our nurses the other day, the one who lowered Riley's oxygen and showed she can breathe on room air, really showed us that sitting around here any longer then needed is a waste of time for all involved. From the PICU doctors perspective we can tell they are "done" with the care they can provide for Riley and really have no answers about what her future holds except what they know clinically. So, it's time to find Riley the rehab facility that will give her the best shot at front loading her body/brain on the road to recovery.
So our search begins. We don't want to just end up somewhere we are directed to go and we are willing to travel to find the right facility for Riley. We are trying to align what she needs with what is available and we're hoping we can find something local. If not, we'll go wherever we can get her the best of the best. Hopefully, the social worker will be helpful in guiding us to the right place. We're looking specifically for a pediatric brain injury specialty program. Most that we have found via the internet are out of state. In our opinion, Riley needs a specialized facility that has dealt with a case like hers. Rehab here at the hospital is very general and although they are knowledgeable about cases like Riley's they really haven't ever specifically dealt with one. I'm hoping the 30 bed inpatient floor at CHLA will have what we need but, we'll see.
Riley's age is still at her advantage and I spent the majority of the afternoon reading through medical conference articles and stories of recovery from many different age groups. Each one pretty much reiterated what the other had said and gives us a good baseline of where we need to assist Riley and what we need to do for her.
To say this weekend left us down would be an understatement. As I mentioned it is super quiet here on the weekends and with the restrictions on visitors it's a ghost town.
Our feelings have fluctuated between anger, sadness, frustration and then a surge of planning to find the best ways to help Miss Riley. There are so many variables to get together and we know our road, Riley's road, is long. As I drove to the hospital this morning Dave reminded me that we are fighting for what is best for Riley and we need to really put all of our emotions in to that fight.
Riley still amazes us with what she has done so far. Things we were told she wouldn't ever be able to do or may never do she's done. I was able to lay down next to Riley today during one of her episodes and she was so calm after we both fell asleep.
We hope Monday brings us some answers and peace with decisions we are making about Riley's care and future.
Please continue to pray/think good thoughts for our sweet girl. Please also pray we make the right decisions for Riley. It's overwhelming having to decide to do things to our baby girl that we barely knew existed 4 weeks ago. We're trying to educate ourselves as best as we can but, the information is endless and time is short in the sense of moving forward from here.
Love,
Dave, Megan, Logan, Mason and Courageous Riley
You guys are so amazingly strong! You all are never far from my thoughts and are always in my prayers. Keep fighting!
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