one I could never have anticipated & one, sadly, not worth celebrating.  Tomorrow marks the 2 year anniversary of this current hospital admission.  Two years ago tomorrow I put the boys on the bus with kisses & a promise for McDonald’s and hockey practice after school.  Two years ago tomorrow I returned home to find Emerson seizing & burning with fever.  Two years ago tomorrow I rushed her to the ER at Denver Children’s Hospital.  Two years ago tomorrow began a journey far exceeding my wildest imagination – filled with so many ups & so many downs, so much worry & so much hope.  Two years ago today was the last day I would spend at home.  It is amazing how suddenly & unexpectedly life can change…

Emerson had been improving all week & plans were made for discharge to our Omaha apartment yesterday.  Indeed Emerson left her room on the general pediatric floor yesterday… she did not go out-patient, though. Instead she transferred to the PICU.  She woke up looking “off” & deteriorated all through the day.  She’s been sleeping now since 11:30 yesterday morning – 23 hours straight.  She looks septic, but she doesn’t have a line.  Blood cultures for now are still negative.  Something is very wrong, but there are no good clues as to what’s going on… at least not yet.  She’s been making unusual, repetitive motions with her mouth.  Her blood pressure is low & she looks acidotic on labs this morning.  Barring any hidden infection, my bet is she’s been seizing again.  We’ll see what the team has to say this morning on rounds.

I’ve had a rough 24 hours.  I was mentally prepared for discharge yesterday… I was not mentally prepared for this.  Emerson does not look good at all.  Her coloring is awful.  In the past they’ve always had a good suspicion as to what’s going on & they’ve always started treatment immediately.  This time they are treating nothing.  They don’t know what to do.  What’s more, Emerson lost her peripheral IV yesterday & after 6 unsuccessful attempts is now left with no IV access.  The team won’t place a central line because of her historically high risk for sepsis, but she literally has NO peripheral access.  So, she sits here today with nothing.  That is very scary for me.  If she crashes there is no way to push meds… no way other than putting a line into her bone, that is.  The measures are getting extreme.  She’s just been too sick for too long.  Is there ever a point where her body just gets tired?  Is there ever a point where she just decides enough is enough?  I don’t know the answer to that, but I’m fearful…

I try so hard to stay positive & I try so hard to trust.  It’s not been easy though.  I’ve watched so many of our “friends” pass & I can’t help but wonder when it’s Eme’s turn.  I can’t help but wonder if today is the last day I’ll hear my sweet little girl’s voice.  I close my eyes and all I see is Jim and the boys surrounding her as she slips away.  I see Collin falling apart.  I want so badly to protect him.  I want so badly to spare him this, to give him the innocent childhood he so deserves.  I am powerless though.  I can’t get the images out of my mind.  I fall asleep & I dream about death.  I can’t shake it.  A great friend once told me it’s the devil trying to take over my thoughts.  I tell him to go away, but still the images will not.  I start to cry & I just can’t stop.  I feel so foolish, but nothing will stop the tears.  Conversely, even the smallest, most unexpected thing brings more…

Please don’t misunderstand me.  Emerson is not gravely ill today.  Something is wrong, but it could ‘simply’ be continuing &/or post seizure activity.  She could well be up and entertaining the team again tomorrow… I, actually, half expect it.  She’s a fighter with an incredible will to survive and to thrive.  I’m nearly certain I could not have endured all she has in her short life.  She is one remarkable little girl & I continue to have great hope for her future.       

So I started this post saying this anniversary is one not worth celebrating, but maybe I’m wrong.  Indeed Emerson is with us today – something we could only have dreamt for 18 months ago, something that seemed a near uncertainty just 16 months ago.  Without doubt this journey has been difficult.  Without doubt we’ve made sacrifices.  Without doubt we’ll be managing the consequences of those sacrifices for many, many years to come.  She’s here, though, & we have hope – still so much fear, but also so much hope.  Emerson began this journey, really, at birth.  She began this admission at a tender 16 months of age.  Today she’s almost 3 ½.  She’s grown up in a hospital.  It doesn’t make sense &, for me, it never will.  My greatest hope today, though, on this 2 year anniversary & through tears streaming down my cheeks, is that quieter days are ahead (or should I say ‘louder’ days - days with more energy and vitality).  She deserves that, she really does…