Kind of a lot to wrap my head around, but the surgeon on service this week wants to remove Emerson’s other native kidney. It’s frustrating – I wanted both removed at the same time, but was told it was unsafe last week. A combination of differing opinions, though, has gotten us here – one kidney gone & facing another surgery to (potentially) do it again. Ugh!! It’s been a very rough recovery, I just can’t imagine…

After a brief discussion about timing, it was agreed that Emerson would go home first to completely recover from this surgery & then return to do it again. My greatest hope now is that the improvement we see from this surgery will be “good enough” and we won’t have to. It’s such a fine line knowing how far to go, though – it will never be perfect… how good is “good enough”?
I suppose time will tell.

Again, this week, I am reminded to breathe and let go. There was a reason for this, there has to be – a reason why Emerson may have to endure this again & a reason why we will go home facing another lengthy admission, apart from family, to do it all again. We never know the outcome of the path untaken in life & I have to believe this was the best path for Emerson. I don’t understand it, but I choose to have faith.

In all, it’s a constant battle between being cautious & “safe” and being practical & realistic. Yes, Emerson’s safety is important (obviously)… but we also can’t live in a hospital 600 miles from home while doctors very slowly & methodically work through all her problems. It’s a difficult balance to strike & a hard message to convey. Sometimes, though, I think we need to be reasonably aggressive with the intent to shorten hospital stays & maximize time at home. And while everyone is wonderfully thoughtful and caring with Emerson, I’m afraid some lose sight of the “bigger picture” – that Emerson does not function independently, but rather that she is part of a greater whole. Again, there are no easy answers. It is a very difficult situation all around.

For today, Emerson continues to have pain & they increased doses and added more meds to address it this morning. In addition to “real” pain, though, she’s also now developing “behavioral” pain – it’s sometimes difficult to separate the two & always difficult to manage. Emerson has been very agitated with lots of yelling & screaming today – my head is pounding.

Otherwise, things look pretty good. She’s transferring out of the PICU today or tomorrow and I’m hopeful that different distractions, along with the freedom to move around more, will help with the pain situation. I’ve asked everyone to aim for discharge in 2 weeks & am hopeful that wherever she is then will be “good enough” for now. I’ve missed the entire summer at home with the boys & really want to be home when school starts – both are transitioning this year and I want to be there to help.

It never gets any easier, that’s for sure… & as I sit in my little red recliner, at the side of my daughter’s PICU bed, for hours on end (going on 5 straight weeks now)… I cycle through all the potential scenarios for her & our family… and none of them are all that great, honestly. So I’m left, again, resting on my faith – believing there really is some greater reason for all this, something much bigger than her or me, & hoping that things will continue to improve so we can go home soon. And praying – praying that some day this will all make sense.