After a long night of missed opportunities to wean Emerson’s dopamine, repeated pokes for additional peripheral IVs (she lost one & the other, through which her dopamine is dripping, is extremely tentative at best), umpteen tight arm bands, needle pokes for labs, & hours of relentless screaming, I’ve come to a decision…  I asked the team to aggressively wean Eme’s dopamine this morning in preparation for discharge to home this afternoon.  Let’s just say my request was met with a few raised eyebrows…

I was told there will have to be some heavy discussions, the first of which I had this morning with the Liver attending on this week.  He is a very knowledgeable & senior member of the team.  He knows Emerson and our family well.  He seemed a bit surprised at my request, though, as this is a definite shift in goals for us from the last time Eme was in-patient here.  He very much needed me to understand the potential consequences of all this & to think through exactly what they would look like and how they would play out.  I’ve talked to several other people since & the general consensus is pretty straight forward – it is not something anyone will medically recommend, especially in light of no plausible explanation as to what happened yesterday &/or where this is ultimately going, but it is something everyone will support based on our wishes and a genuine respect for where we are at in this journey.

It was strongly recommended that we fly & not drive to Michigan as there was much concern as to what would happen in the face of a traumatic situation on the road with the boys in the back seat.  It was also suggested we not plan to stay the full month as no one thinks it will be possible to maintain her hydration status that long without intervention.

I’ll let you know how the day transpires, but for now that is the plan – wean & discharge from the PICU.  For the first time on this journey I really feel like I’m choosing quality of life.  My biggest fear is that we’ll spend forever trying to put Emerson back together & she’ll ultimately die before she ever had a chance to live.  I don’t want that for her.  Anita (Aria’s mom) encouraged me to stand firm & fight for her life.  That, indeed, is what I’m doing today!