Where to start?  If you have access to & haven’t already, please be sure to join the “Pray for Emerson” page on Facebook.  I’ve been leaving short, frequent updates there as things change…

Emerson extubated yesterday & is breathing on her own with just a small bit of oxygen support.  That’s the good news.  Unfortunately, though, she’s not looking so good.  Her coloring is poor & she’s having a lot of abdominal pain.  The doctors here have increased her dose of dilaudid 3 times, but still relief is hard to come by.  The ulcers on her wound are growing.  I’m told they represent necrosing tissue – not dead yet, but actively dying.  And the center of her wound is bulging too.  I’m told that is most likely the result of inflamed bowel pushing up and out of her abdominal cavity.  A surgeon stopped in to look at everything & said there really isn’t much that can be done.  Ideally they’d pull healthy skin over the wound, but Emerson has no healthy skin left anywhere near her wound.  It’s a mess.

So, we sit in the PICU at Detroit Children’s Hospital &, as I knew would happen, I take back everything I first said about this institution.  I was tired & cranky… that’s my best explanation for my bad behavior.  If I’ve learned anything on this journey I’ve most certainly learned to never judge a book by its cover.  It can be said about people & equally about places.  This place is, arguably, not the most comfortable hospital I’ve ever been in but the professionals here are wonderful.  What they've taken the time to learn about Emerson over the past several days is nothing short of astounding.  I listened to the Chief Resident round on her this morning & you’d think she’s been a patient here for years, certainly not days.  Thank you to everyone at DMC for taking the best possible care of my little girl and for making me feel both understood and included at the same time!

Now for the “plan” - I heard the words “life flight transfer” uttered in conversations this morning & by the time I stepped out for coffee the wheels were already in motion.  Back Up...  I called Omaha & talked to the coordinator there for a while (boy have we been blessed with amazing medical care as she, too, is extraordinary).  I totally understand everyone’s hesitation in caring for Emerson but we can’t life flight back to Omaha every time she gets sick.  She is sick every 3-4 weeks.  Short of divorcing my husband and moving to Omaha we have to figure out how to live elsewhere.  Already we’ve made the decision to decline any & all future abdominal surgeries.  Barring that, what else can be done?  If she needs antibiotics we will do that, but that can be done here.  The team in Detroit is concerned that Emerson will continue to deteriorate and they want to transport her now while she’s stable.  My dilemma, though, is this – if she does indeed continue to deteriorate & if she does indeed become too unstable to transport, then maybe it’s time - time to (insert deep, slow breath) let her go.  Tears... the decisions for Eme have never been easy but they just keep getting more and more difficult every day. 

It’s all so incredibly hard.  As I sit here at Eme’s bed side I know this is not the life I want for her.  She is miserable.  As I sat on the beach with her just one week ago, though, I knew I could not let her go.  I want more of that, not this.  I can’t lose that.  I don’t want this.  How do I stop fighting if it means no more good days?  But how do I let this go on and on and on when the good days are so few and far between?  It’s just an impossible place to be.  Again I ask you to please pray that God will take these decisions from me… I don’t want to be responsible for making the wrong one.  I love her so much, I want so desperately to make the right decisions but I don’t know what they are anymore.  Oh how I hate this, so so much.

In the end I believe Omaha understands where I’m at right now.  The coordinator is talking to the surgeon there & he will call Detroit to re-discuss the transfer.  If the surgeons in Omaha have any tricks up their sleeve (short of intra-abdominal surgery) to treat &/or heal this wound we’ll return.  If not, we’ll finish the course of antibiotics here & hope for the best. 

That’s where we’re at.  I expect to hear back from Omaha this afternoon…