First & foremost, let me explain my recent absence here… Emerson was discharged from Omaha, as planned, about 3 weeks ago.  Our days, since then, have been some of the most hectic I’ve ever experienced.  Princess Emerson has always been complicated, but the new “plan” I devised has taken her cares to a whole new level.  I’ve been averaging about 3-4 hours of sleep a night, with the occasional 2 hour night here & there.  My diet consists of whatever I can grab quickly – mostly chips, cookies, & diet Pepsi.  I haven’t even opened my laptop… haven’t replied to texts or phone messages… haven’t even read any emails.  You won’t believe what isn’t getting done in my life.  Then again, looking at Emerson’s medical plan, you might just not believe what actually is getting done! 

At a recent appointment with the team in Denver I was told Eme’s become too complicated & they’re no longer comfortable managing her cares.  They said all future admissions will most likely result in a life flight back to Omaha.  Hmmm… trained nurses working 12 hour shifts can’t manage her, but I can?  I’m not a nurse, I don’t work 12 hours then get 12 off, I’m just a Mom... trying to run a house, hold a family together, make up for lost time with my boys, and manage the cares of one medically fragile little girl.  It’s a feat to say the least!

Alas, today I did open my laptop & today I do have time to update… and, you guessed it, today Emerson is back in the hospital.  I’m experiencing some precious down-time, but sadly at Eme’s expense.  All in all she got 3 weeks… that’s it.  To say I’m a bit disappointed would be an understatement.  I’d really hoped this new plan would be the answer to get her much more time at home.  Instead her weeks at home went very much like they always do – 1 good week, 1 week of low grade fevers, 5 days of increasingly frequent low grade fevers, then bam – sick.  Emerson woke up Thursday morning retching & vomiting with a fever of 102.  I called 911 on strict orders from Denver & by the time the ambulance arrived her fever had climbed to 104.5.  What I believe the new plan did do, though, was better prepare her for this.  A fever that high in the face of probable sepsis would have surely brought seizures & plummeting blood pressures in the past.  This time, though, she remained much more stable through it all.  Her pressures were soft, but not falling apart, & the admission carried with it much less drama than usual.  That’s encouraging… 

Emerson went to the OR for a central line Friday & crashed once requiring rescue meds to bring her blood pressure back.  It used to be line placement was a “simple” surgery… sadly nothing is routine anymore.  Other than that incident, though, she did well & all in all looks good today.  I’m not sure what the plan is from here, but as of today we still have no good explanation for her decompensation last week.  The general consensus seems to be probable sepsis &, in the face of no indwelling catheter/central line at the time, a pocket of infection somewhere in her abdomen.

The initial directive from the team here Thursday was a flight transfer back to Omaha.  They wanted to send her that day.  I declined.  There was a lot of discussion & will be much more to come.  In all, our goals for Emerson are changing.  We aren’t ready to let her go, but we’re also no longer willing to do everything possible to save her life.  For years & years we’ve stopped short of nothing, at the high expense of our family.  We’re not doing that anymore.  We are slowly but surely accepting where this is all going.  The end is inevitable.  I think we know that.  We’ve certainly been told it over and over and over again.  Eme’s fight & tenacity is second to none… but she is a sick little girl.  We do know that.  We’re no longer willing to sacrifice our family simply to add days for Emerson.  It’s not to say we’ll never return to Omaha.  There are no words to describe the gratitude in our hearts for all they’ve done there.  Emerson is safest in their care - I believe that to be true.  I also believe, though, Denver is able to care for her too.  They question their ability to care for Eme.  I don’t.  I feel very comfortable here… I feel heard & valued as a member of the team & I really appreciate that.

So, this wasn’t her time.  Emerson is sitting in bed watching Mickey Mouse Club House & has been fever free for 24 hours now.  She’s on powerful antibiotics which I’m sure has something to do with that.  We continue to battle low potassium & bouts of low blood pressure – the usual.  She’s on minimal feeds through her gut.  In line with our overall objectives, though, I’m going to start pushing for discharge as soon as possible.  There are many things that complicate that though, & there will be much discussion in the coming days as to what the future looks like for Emerson and how things will be handled here in Denver.  For Emerson to discharge anytime soon would mean the management of a central line at home.  The possibility of her going massively septic under that scenario & dying in the back seat of my car on the way to the hospital is very high.  I know her prognosis is poor, but I don’t want it to end like that.  In Omaha it was decided she wouldn’t be discharged with a central line… of course, though, that means much more time in the hospital.  As has been the case for some time now, there are no good alternatives anymore.  I suspect at some point I’ll be ready to take her home & let this play its course.  Not yet though… not quite yet.  Given all that, I'd guess we’ll be here for another week or two.

Thanks for your patience with me.  I know some people will drift away when things go quiet.  If you’ve been with us a while, though, please keep checking.  We (I) appreciate your support more than you’ll ever know.  I need it, really.  I never stop thinking about you all… please know that.  Please also know no news, for the most part, is good news.  It's when Emerson is in the hospital that I have time to update.  I’ll always let you know when we’re here.  A million thanks, also, to those of you who’ve found it in your heart to donate something, big or small, to Emerson’s COTA account.  All together you’ve helped us recover some expenses from our time spent in Omaha this year & I (we) thank you.

To end on an up note, I’ll leave you with some pictures from our days outpatient.  Shortly after returning to Colorado we pulled the boys out of school & escaped to the beach for a long weekend.  It was exactly what the doctor ordered for the health & well-being of our family!  A long-time coming, hard earned escape from reality, even if only for a few days… enjoy!