Emerson woke up yesterday with a temp of 38.9C (102F).  It rose to 39.5C (103F) by afternoon.  It wasn’t escalating out of control, not an emergency, but still 39.5 is not a fever one can ignore in an immune suppressed, 2X multiple organ transplant recipient.

I talked to the team in Omaha several times and they urged me to please take her in and, at very least, rule out something “simple” (i.e. a UTI) that could easily be managed with antibiotics.  Oh if only anything were ever that easy…

I took Eme to the ED in the small beach town of Port Huron, Michigan.  We sat for at least an hour in the waiting room followed by hours (plural) in a semi-private room.  Five hours into the excursion & they were still contemplating how to get a urine sample.  Eight hours in and I’d seen a doctor only twice for a total of maybe 60 seconds.  I think it safe to assume they'd rarely, if ever, seen anything the likes of Emerson and had no idea what to do with her.  Duh… how on earth did I not see that coming?!?  Has this actually become so “normal” for me that I’ve forgotten how extraordinarily NOT normal it really is?

My final 30 second ‘conversation’ with the ED doc in Port Huron went something like this – “there’s an ambulance on its way to transport you both to Detroit Children’s Hospital, she’ll be a direct admit to the ICU, she’s going septic.”  Huh?  Do I get a say so??  Can we talk about this??  Apparently not.  Note to self: next time head straight to Detroit.

So, back to this place I find myself in right now.  The PICU at Detroit Children’s Hospital.  The unit is… very old.  The rooms are… very small.  I have an upright wooden chair.  I am NOT allowed to sleep in this room.  Not even nap (?!?).  If I do happen to drift off at any time during the day I’ll be asked to leave.  Where to you ask?  There are “benches” in the parent lounge or they can call the Ronald McDonald House, but they’re (insert eye roll) “really full”. 

Ahhh… deep breath… just spent a long time with the ICU Fellow & Resident.  They were, not surprisingly so, wonderful!  I’m feeling much better already.  The overwhelming consensus at this time is that Emerson has a very nasty pseudomonas wound infection.  Not sure where it started… j-tube, open wound, perf drain.  Wherever it started, though, it appears to have migrated amongst them all & is now infecting her entire abdominal region.  I’ve been complaining about a steady increase in drainage & odor from her wounds for weeks (maybe a month).  I’ve been told its “normal”.  I knew… I just knew it was not.

Assuming they’re right, the plan will be 2+ weeks on IV antibiotics.  Uggh!!  And it looks like a vast majority of that time will be spent here in the PICU.  Double Uggh!!  Their explanation for it was completely reasonable though - she’s fragile & complicated, the only thing worse than staying here would be bouncing back & forth between here and the floor.  So, for now we stay put.

Of course there was also talk of a dreaded central line.  Triple, quadruple Uggh!!  If she needs a 2 week course of antibiotics, though, there’ll be no other option. 

I talked to the doctors about our overall treatment goals right now.  We will certainly stay for any acute issue that can be alleviated with a course of antibiotics.  We are not, however, interested in a lengthy hospital stay to treat any of Eme's long term, more chronic conditions/complications.  They were very supportive & definitely in favor of helping us get back to the beach asap.  In line with all that I asked what the chances were we could get out of here tonight… ha, “not so good”!  Never hurts to ask!

Emerson’s fevers are down today, but still hovering around 38.5C (101.5F) degrees – an “official” fever in the transplant world.  She’s been complaining a lot of tummy pain & scheduled doses of dilaudid seem to be helping.  Her blood pressures are soft, but not requiring intervention (yet), and her O2 sats have been dipping.  It looks like she’ll need some O2 support.  She smells so bad.  I really can’t over emphasize how bad it is or how quickly it seems to be getting worse.  If this is not infection her organs are rotting… clearly something is happening.  I can barely stand to be in her room without a mask.  All that aside, though, she’s resting comfortably at the moment.  I, on the other hand, haven’t slept since Sunday night & so wish I could say the same.  Ahhhhhhh…. A mother’s work is never done!