Keep on Keepin' On

Just wanted to give a brief update on Quinn's condition.  Thank you to the thousands of you who have checked the blog, contacted us by comment, Facebook, email, text and phone call.  It'll take some time to get back to each one but we'll try.  In the meantime, please know that every one of the outreaches means so so much to us and truly helps us make it to the next step.

Quinn is still in PICU.  There was some rumor yesterday of her moving to a floor but those have sort of waned away and here we remain.  

Her vitals have basically stayed intact and the bleeding seems to have finally come to an end.  Quinn's current issues are surrounding tolerance of the feeding and fluid as well as comfort and low platelet counts.  

She's awake and unhappy for 7, 8, 9 hours at a time during the day despite morphine and tylenol.  Her albumin levels are low and her Niemann-Pick cells are gleefully soaking up the extra fluid - causing tremendous water retention and bloating.  Because of this, we've had to periodically cut her feeds (of Pedialyte - she's hasn't even gotten to formula yet) and her maintenance fluids through the IV, leaving her completely empty.  We're trying a diuretic now to see if we can't get some of that water released.

Many people have asked if we have determined the reason for the bleeding.  As Brett and I have refused an endoscopy, we will never be entirely sure but the surgeon believes that it is a rare (of course!) result of the g-tube placement.  The severity of the bleeding can probably be linked to her Niemann-Pick (low platelet counts are symptomatic of the disease).  So, the perfect storm of incidents.

So, that's where we are now.  I'll update again when there's a change.  

Have to leave you with this photo that Brett took yesterday so you can see that she looks ok - coloring and attitude ;)  The caption is Brett's as well - I can take no credit for this :)

chillin' with her posse