Two, three days ago it was adrenaline… I’m not sure what’s keeping me going today.  Pure, simple necessity?  Maybe so.  No alternatives, no option to do anything else.  I’m somehow awake, though, & able to form a (nearly) complete sentence.  Indeed the body is a remarkable machine!

Emerson was transferred to Omaha via life flight last night.  She remained mostly stable throughout the day in Detroit yesterday, although continued to need multiple albumin boluses for low blood pressures as well as on-going electrolyte replacement drips.  As Murphy’s Law would dictate, her lowest pressures of the day started kicking in about 30 minutes before departure.  A hefty fluid bolus, though, put her in a good place for travel.  She did remarkably well on the flight requiring very little additional support for the 90 minutes we were in the air.  It was smooth & uneventful – just the way I like it!

We arrived at the PICU in Omaha to a flood of familiar faces which made for one relieved, weary mom.  Note to self: never underestimate the importance of familiarity in caring for your (very complicated) daughter.  It was truly remarkable the weight lifted off my shoulders when I knew the team caring for Emerson would make all the right decisions… without my input.  I could suddenly relax for the first time all week.  Still, though, I could find little rest.

Emerson continued to need back to back boluses over night for blood pressure support and was quickly started on norepinephrine when, despite 3 albumin boluses, she could not maintain adequate bps to insure profusion to her transplanted organs.  She is now at 80% of the maximum dose for norepinephrine and is still requiring albumin boluses on top of it.  She continues to complain of belly pain and is very pale and lethargic.  She was febrile throughout the night.  She’s been on Colistin, Tobramycin, & Linezolid for 5 days – her wound looks better (the drainage & odor are definitely decreased) – it just doesn’t make any sense.  She should be getting better, requiring less support.  Instead she is requiring more.

In rounds this morning Dr. M said, while she doesn’t look good, she’s looked worse.  Considering she’s lived through a cardiac code and the months & months of recovery afterwards I’d certainly agree.  She has looked worse.  This is not as bad as it gets for Emerson...  Something is not right, though, & it’s not sitting well with me today.  The thought is to try & get her blood pressure stabilized today, support as needed, and watch her closely.  Assuming she doesn’t start to decompensate further they’ll schedule a CT scan for tomorrow followed by an intestinal scope with biopsies to look for rejection.

Infectious Disease just popped in unexpectedly to say a peripheral blood culture obtained here late last night is already growing gram negative organisms.  (Eme’s blood cultures from Michigan were clear.)  The fact that a) it was a peripheral (not a line) draw & b) it returned positive so quickly, says she likely has a high level of very active bacteria cycling through her blood stream.  Certainly that can make one very sick & would explain everything that’s happening right now.  How, though, does that happen when she’s on such strong antibiotic coverage and has been for nearly a week?  It’s fairly safe to assume she’s growing the same bug in her blood that was in her wound & we’ve been aggressively treating that. 

In all, I don’t think we have a real good handle on everything yet.  I’m not sure where this is going, but I am sure we’re in the right place.  Once I put aside the drama of our grand entrance yesterday (oh how I wish I could escape to a deserted island for a few years) I know we all, collectively, made the right decision to bring Emerson here.  I feel equally confident that they’ll get this all figured out and have her back on the road to recovery soon! 

Your support has been overwhelming & has touched me beyond words.  Thank you so much…  I’ll continue to update as things change.