Day 1 Post-op

I just wanted to send y'all an update and tell you that our sweet girl is every bit the rock star that we hoped she'd be.  They reinserted her trach today and extubated her - so no more tubes in her mouth and no more tape on those puffy cheeks.  Oh, to see that beautiful little face again... and pink this time!  They are a little concerned (using "concerned" loosely here) about her heart rhythm.  Early this morning, she was in first degree heart block.  This means that her heart was conducting a signal, but it wasn't a normal rhythm.  She's still on the leads to control her heart rhythm right now, so no worries.  A few hours later, they checked again and Ellie was in complete heart block.  From what I understand, it's not conducting the signal at all from the right atrium through the ventricles.  This isn't out of the ordinary post-op - they're not too concerned about it.  They'll be watching this closely.  If it doesn't return by day 10 post-op, Ellie will likely earn a pacemaker.  It is a good sign that she was in first degree earlier in the day... so complete heart block may just be a transient thing that she moves past.  They won't check again until tomorrow morning because messing with her heart rhythms right now throws of her hemodynamics (errr... the equilibrium of all of the motions and pressures and such related to her blood).

Her liver was enlarged this morning - which is just an indication that her right ventricle was a little stressed... nothing too concerning, again... something we're watching.  And she was VERY puffy.  By mid-afternoon, she'd responded beautifully to diuretics and had peed off a huge amount of fluid.  Her chest and legs were instantly less puffy and her liver had gone down some... excellent!  They've even started putting some yum yum in her belly - VERY SLOWLY.  They're pushing for a procedure early next week that would open the subglottic stenosis (narrowing of the trachea between the voice box and the stoma site).  This could greatly impact Ellie's dependence on the ventilator and possibly the trach... but we won't know the impact until we go in for the procedure.  This is really good, really exciting news.  We'll keep you posted on that... trying to be cautiously optimistic at this point, though.

Ellie is still heavily sedated, which is a good thing because we know she's comfortable and able to rest.  They had to work very hard to find the sweet spot in medicines to keep her this way (this has ALWAYS been a struggle for Ellie).  She has not stormed at all yet - but we'll get a better scope of her storming outcomes once she's off of sedation.  We're trying to keep her sedated for a little while longer... at least until we get the chest tubes out - likely tomorrow.  Ellie has periods where she's easily roused - a very good sign - but something they need to make sure is controlled.  We want her to stay super comfortable and not have to worry about her shenanigans and wiggles with so many tubes and accessories right now.  And we surely do not want to risk stressing her into a storm.  The stress of storming could be detrimental to her new septum and valves.  The medical team has a plan in place to treat storms if they arise.  I may or may not have taken advantage of her sedated state to give her a fresh pedicure.  I mean... she can't wear clothes or bows right now... she's gotta have something!  Thank you, dear friends, for following along and praying for our sweet bug.  We are endlessly amazed by the team here and how our surgeon is advocating for our little girl.  We are in great hands.  We feel your love and presence.  Here are a few pics for your viewing pleasure:

No more tape on those beautiful cheeks!  Trach is back in... looking better all the time!

Like little disco balls

Posters!  Yeah - it's like she's a college student with posters on her walls... she's cool like that.  The black and white one says, "Welcome to Ellie Bug's Room  Be Advised:  You are now in the presence of a warrior"