Everything was in place… all the appointments scheduled & all the errands complete (well, almost).  We were supposed to leave for Michigan tomorrow.  Supposed to…

Emerson had her monthly IVIG infusion at Denver Children’s Hospital this afternoon.  The plan was a ‘quick’ 4-6 hour infusion & home to pack the car.  They elected to run the infusion in the ER instead of the infusion clinic as they normally would. 

I’d been dreading the appointment all week, as it entailed the placement of a peripheral IV & that (as we all know) has become a monumental ordeal for Miss Eme.  I told the ER nurse where to go, though, she listened, & in it went.  Phew… crisis averted, or so I thought.  Just before they started the infusion Emerson tanked.  Her blood pressure started to drop & they started pushing fluids.  95% of the way through a 20/kilo bolus & her pressure dropped to 60s/20s.  She was pale, cold, & mottled.

They rushed Eme into a trauma room & by the time I was able to gather up my stuff and meet them there, at least 10 doctors & nurses were hovered over her little body, bright lights glaring, crash cart in reach.  They started dopamine & were frantically searching for another IV site.  After a missed attempt, they were able to miraculously find one more.  They started 3 IV antibiotics and hand pushed fluid into her veins.  After a sizable increase in her dopamine drip & nearly 2 liters of fluid she finally seems to be at a comfortable place.  She is resting now in the PICU.

Two surgeons came to the ER to examine Eme’s wound.  They both suspect this is a wound infection.  The odor & discharge from her abdominal wound have definitely increased steadily for over a week now.  I suspect they’re right, but I also know she’s very dry.  She’s been retching & vomiting for weeks and her feeds have been at a sub-optimal rate the entire time.  I knew she couldn’t maintain like this forever, even much longer, but certainly I didn’t expect this.  My guess is there’s more than one thing going on.  My hope is it will resolve quickly & this will mean only a slight delay in our trip… not a complete cancellation! 

Again I’m struck by the timing & coincidence (or lack thereof) of events for Emerson.  For months now I’ve questioned what we’ll do the next time she starts to deteriorate at home.  Will we take her in?  Or will we crawl into bed & hold her tight?  They are questions & decisions that have haunted me for a long time.  She’s been outpatient nearly 3 weeks & home roughly 2.  It was just a matter of time.  Again, though, the decision was taken from me.  What are the odds she would crash on the only afternoon we’ve been in the ER in over a month… and we weren’t in the clinic, or in the lab… we were in the Emergency Room (for a scheduled infusion, something they rarely, if ever, set up that way).  What are the odds?  Indeed this was not the time for us to let her go… that was made crystal clear.  I’ve been praying for months that God would take the decisions from me & indeed He did that today.

Jim & I had the pleasure of welcoming Aria’s parents into our home Monday evening.  They were flying back to New Zealand and (conveniently) had a 12 hour layover in Denver.  Their presence that night, as always, was a huge blessing.  They are the most firmly grounded, faithful, & inspirational parents I know.  They are deeply saddened for the hole Aria has left in their lives, yet joyful for the knowledge that she is free from pain & suffering.  They are not bitter or resentful.  They rejoice in the 5 years they were able to share with their daughter & know they will see her again.  Their message to me was clear – when/if it happens, it will be okay.  I believe that… more than ever, I really do.  Today was not the day, this is not the week, but when/if it happens I do believe… it will be okay.

Thank you so much for all your continued prayers.  I’ll let you know when we finally depart for the beach!!