A Better Day

What we have learned today is that Lily is a mystery.  There is no obvious, jump out at you, reason that she went into cardiac arrest.   That, as you can imagine, was not the most reassuring sentence that we heard today.  If they’re not sure of the reason, then how on earth can we go home feeling reassured that it’s not going to happen again?  While I know they’re not going to pull the ventilator and send us on our merry way tomorrow, it certainly gives us reason to pause and put into perspective the terms we’re willing to leave the hospital on.  The doctor supervising Lily’s care today was very blunt with us and told us, in no uncertain terms, that they may not be able to fully figure out exactly what happened yesterday morning….unless it happens again and they’re on hand to actually assess the situation as it happens.  Obviously, this is not something we’re aiming for as we never, in a million trillion years, want that episode (that’s what they call it at the hospital – an episode – it sounds much nicer than “almost dying”) to happen again.  So for now, the plan is to start from the top of the most obvious reasons and try to rule them out as they watch her closely.

They inserted a new chest tube today (for those of you counting, that’s now 3 chest tubes) with the help of IGT (Image Guided Therapy) so that they could actually see that it was going into the fluid pockets that are on her left side.  The doctor doesn’t think that the fluid pockets were a contributing factor to the cardiac arrest but again, they want to get rid of them so that they can rule it out.   She hasn’t had a  fever and the cultures that are coming back are not showing any signs of infection that they can test for, but since those were the two most obvious possibilities, we’re no closer to getting to the bottom of this then we were yesterday.

We have realized though that we really and truly are supported by so many people.  The outpouring of love that we have gotten through facebook, this blog, calls and visits is incredibly overwhelming.  Even at the hospital we have run into several of the nurses or parents we’ve gotten to know and they’ve all been heartbroken for us when will share the story and find out why we’re back.  It’s certainly the bright point in a pretty bleak week.