What a week…  To those of you who follow us on Facebook (on the “Pray for Emerson” page) & have some idea as to what’s been going on, thank you for your support.  To others who are unable to do so, I apologize for not updating here.  It was an incredibly emotional week and I’m having a very difficult time finding the words to do it any justice at all.  I’ve still not completely recovered, but am trying to find the energy today to get back to life…  I haven’t returned calls or emails for days – if you’re on the receiving end of that, again, I apologize.  I more or less retreated to a deeply personal & quiet place and am hoping to find a way out of my shell this week!

After anticipation Monday for word of a hospital transfer, the news Tuesday was definitive – Denver had declined & would not reconsider.  They wanted Emerson on full intestinal feeds & off antibiotics with no central line.  Basically they wanted her put back together & wrapped up with a pretty red bow before they’d assume her care.  It meant my hope to finish treatment closer to home, where I could be a mother to 3, not just 1, wasn’t going to happen.  It meant I’d miss yet another 1st day of school… for the 4th year in a row.  In all it meant, once again, we were stuck in Omaha.  It’s nearly impossible to put Emerson back together & even when we’re successful it never lasts for long.  What did it all mean for us moving forward?  As difficult as that question was to consider, it paled in comparison to the questions that would follow that day…

What came next, seemingly out of nowhere, was a lengthy discussion about what’s happening to Emerson & where it’s all going.  It was the team’s final conclusion that if it was ever going to get better it would’ve happened by now.  The message was loud and clear… hope for a positive outcome was all but gone.  I was told this admission, especially, dealt everyone a heaping dose of reality.  After seeing pictures of a happy, seemingly well sustained Emerson on the beach, just one week later she was intubated & on pressors for a UTI.  She’s since had 3 separate bouts of sepsis with a total of 4 gram-negative organisms and 1 fungus.  Her fluid needs are greater than ever & her potassium imbalance is a growing challenge at best.  I was told, bottom line, things aren’t going to get better & it’s time for a formal meeting to discuss end of life protocol & to put into place intervention guidelines for the next time Emerson gets sick.  It was no longer 1 surgeon’s opinion… it was a collective message from the entire team & it was an ominous one. 

The meeting was tentatively scheduled for next week & I was urged to fly home this weekend to talk to Jim about everything in person.  I called him, though, & he didn’t want to talk about it.  I didn’t want to talk about it either.  But I had to.  Nothing felt right.  Everyone has always told me when the time comes I’ll know… but I didn’t know.  I knew things were progressing & I knew Eme was heading to a potentially bad place, but I wasn’t ready for this.  I seriously couldn’t breathe.  I cried rivers… everyone who came to check on me cried too.  I had no idea how I was going to get through the week ahead.

I got out of bed Wednesday morning, though, with my first clear thought – I wasn’t ready to give up.  Not yet.  I asked the surgeon to let me put together a 4-month written plan for Emerson.  In that plan I’d outline her “ideal” medical management through the remainder of the year, suggesting new tactics & different approaches for her care.  If, at the end of the 4 months, the plan succeeded we’d put together a 6-month plan.  If, however, it didn’t I’d come ready to discuss hospice care and end of life protocols.  The surgeon shrugged his shoulders seemingly unconvinced, but agreed to listen to what I had to say.  I requested a meeting for Thursday, the next day, so we’d have time to implement any changes asap.

I spent the next 24 hours preparing for the most important meeting of my life.  I started by outlining all Emerson’s medical diagnoses’ & complications.  I listed what was being done to manage each one & researched extensively to see what, if anything, we could do differently.  I looked for new & experimental treatments that we may have missed.  I very carefully examined the difference between her care at home & in the hospital to try and determine why it is they can patch her together here but she can only sustain it a matter of weeks at home.  I looked at her infections – where they come from & how she acquires them.  I looked at what’s most likely to take her life.  I literally went through her entire body from head to toe.  What I found is there aren’t many holes… Emerson’s had extraordinary medical care & the teams involved haven’t missed much.  What I ended up with, though, was a 7 page report outlining Eme’s medical history over the past 4 years with several new ideas & a plan to (hopefully) ensure her journey continues.

Consequently, I also ended up with an overwhelming sense of peace.  I believe my plan will work, but in the end don’t know how the next 4 months will play out.  However they come to pass, though, & whatever that meeting looks like at the end of the year, I feel much less panicked & out of control.  I have tremendous peace in knowing we are doing absolutely everything we can for Emerson.  If, despite our best efforts, she fails this plan I know there’s no one to fault.  How desperately I wish I could take this all from her, how deeply I wish I could restore her life with a cure… for reasons I’ll never understand, though, that’s not how it's meant to be.

Along with that peace came a clear knowledge of what is best for Emerson right now… a signed & officially enacted DNR.  It’s not best for me, make no mistake about it.  It is best for her though.  I’ve been praying for months that she’ll let me know when she’s had enough - if her heart stops beating it’s a certain message she’s done.  Should that happen, out of admiration for this little girl I love so much & all that she’s fought through, I will let her go… peacefully.  It is the right thing to do.  For as much as I’ve fretted over this one decision for so long, today I find great peace in knowing that to be true.  The team supports this decision completely.

Thursday came with a meeting to discuss my plan and I’m pleased to say it couldn’t have gone better.  Everyone was warm and receptive… white coats and surgeon caps were checked at the door.  In the end there was 100% buy-in and all were willing and eager to let me try this MY way!  There are some things I proposed that have never before been done in the pediatric population, so we’ve undoubtedly got our work cut out for us.  All are on board, though, and wanting to help in any way they can.  We divided up phone calls for next week and together, I’m hoping, we can make some real headway in the next few days.  The surgeon is prepared to write letters of medical necessity & said Eme is the “perfect candidate” to push this through.  Indeed there’s not much to lose at this point.  The meeting ended with smiles & sighs of relief.  I definitely sensed a renewed spirit of hope amongst everyone in attendance.        

It’s Sunday night now and I’m trying to rest up in preparation for the week ahead.  I’m shifting into fight mode & preparing to battle off the “no’s” & “we don’t do that’s” sure to come my way.  I’m also looking forward to taking Emerson back to the Lied room with me Tuesday or Wednesday and making the drive home to Colorado Thursday morning.  We have plans for Labor Day weekend that we’re not going to miss!  All in all Emerson is doing well right now.  She came off TPN this morning & has been on full intestinal feeds all day.  Her outputs are up, but only a little, and she’s not vomiting.  Not yet.  She’s happy, albeit very weak from another lengthy hospital admission.  She’s attempted to stand just a few times & has fallen each of them.  She’s perfectly content to sit in bed, though, & watch Barney all day and I’m certain will be even happier doing so from the comfort of home!  She continues on prophylactic antibiotics until we pull her line, so her risk for infection right now is low.  She’s in a good place & I don’t foresee any obstacles to discharge in the next few days.

In the end, I questioned the surgeon as to why Denver’s so hesitant to care for Emerson.  He explained it like this – we have an extraordinarily complex patient population here (in Omaha), & Emerson is our most complex patient… we don’t know what to do with her most of the time; no one else has a clue.  In many ways it makes sense.  How is it she’s the most complicated patient here though?  Simple, no other patient this complicated has survived this long.  By all accounts Emerson should have died many times already, but she keeps fighting back… add her "won't take no for an answer" mother to the mix & we’re a force to be reckoned with!  If I’ve learned anything over the years I’ve learned odds are meant to be shattered & statistics best be ignored.  Don’t ever let yourself be led by what is supposed to happen… set forth and create your own path in life.  If you believe it, it can happen.  Please join with me in prayer that this new plan will bring Emerson medical stability & a chance to sustain life outside the hospital.  It will not cure her, I know, and her long-term future remains very uncertain at best.  She’s earned her chance to be a little girl though – even if only for a little while.