Night of the Zombies

The dawn of a new day, 2 screaming kids at 3am and this time it wasn’t even ours.   Nina has mastered the Zen of sleeping so she didn’t hear a thing. Our little angel decided to wait until 4:00am to wake up.  When she is a teenager we’ll make sure she doesn’t sleep in past 7am.

As a family unit, we made our trek down Longwood Ave to CHB.  Being good Portlanders and trained to cross only when there’s a white walking signal it’s taken us some time to navigate the crosswalks with the flashing red hand that seems to be on 99% of the time.   While Nina and Ella went to have breakfast, I was able to spend a few hours sitting at Ariana’s bedside, reading and talking to her.  She has responded well to her current settings and should be in good shape for this week’s surgery.

Matt

We’ve enjoyed visiting with bright-eyed Ariana.  It’s so hard not to be able to pick her up and hold her.  The most we can do is touch her head and her feet except that she does NOT like her feet touched.  I imagine it’s because they pricked her foot almost everyday for blood testing.  We’ve also been reading to her – Jack Kerouac’s Lonesome Traveler and Malcolm Gladwell’s The Tipping Point.  I’ll let you guess who’s reading what. 

One of the big concerns with Ari right now is her Chyle leak, the lymph fluid that continues to accumulate in her chest cavity.  The drainage tube on her right side releases all this fluid.  This fluid contains proteins, cells and other good stuff that we don’t want her to loose.  They are going to give it time to heal on it’s own but the longer it takes the more of this good stuff she’s going to loose and will be immunocompromised. 

They have switched back to feeding her with TPN.  The plan was to start her on a special formula with mid-chain fatty acids after her surgery on Thursday but that may change.  A nutritionist stopped by today and suggested that they skim the breast milk of its fat and feed that to her.  We’ll discuss this option with the doctors and see if we can make it happen. 

Today they started weaning her off the vent.  They’ll wean until morning when they will do an extubation readiness test and see if she passes.  The docs will decide if they will extubate her for a few days for a time period before she goes into surgery again.  Crossing my fingers – we may get to hold her again this week. 

Here’s hoping Ari’s Chyle leak heals sooner than later!

Nina

Here a few pics from Halloween and today