Here for the long haul, I guess...

This is a short post… just to update y’all on the latest in Ellie’s world.  Because of all the reasons listed in the last post, the docs came in today to tell us that a trach is necessary to support Ellie’s airway.  BALLS!  (that’s my swear word of choice, in case you didn’t know).  So we’re hanging out for a while yet.  She has 4 tests/procedures that should all happen next week.  On Monday, she’ll get the video swallow scope done.  Next is a sleep study with oxygen titration to see what she’ll need a ventilator set to during the night (which we’ll have at home).  And at some point next week, she’ll be sedated again to put in the trach and the g tube.  Big week for our baby girl.  Blah!  On the plus side, we did find out today that the impedance probe showed very little reflux (only 4 tiny episodes in 24 hours)… which is great.  That means that she is NOT aspirating and that they will not be doing the nissen fundoplication (where they wrap part of the stomach around the bottom of the esophagus to prevent reflux).  Bonus… that was good news. 

Once Ellie is through these procedures, we’ll be transferred to the pulmonary floor so that she can be on a ventilator (hopefully not 24-7).  They’ll have to train us on trach care and the use of the ventilator, of course… and once we’re fluent in these new languages, we should be able to go home.  Dr. Hirsch feels like once we stabilize Ellie’s airway, the options for surgical repair of her heart are more likely to be successful.  He told us straight up that there was likely no way to do a 2-ventricle repair on Ellie.  She’ll either have a heart that functions as a single ventricle (where all of her unoxygenated blood bypasses her heart and flows into her pulmonary arteries to her lungs and her heart then just pumps oxygenated blood to her body) or she’ll have a 1.5 ventricle repair (where only the blood from above the heart… think arms and head… flows into the pulmonary arteries and the blood from below the heart… think organs, torso, legs… still enters the heart to be pumped to the lungs).  A lot of mumbo jumbo, I know.  But without a stable airway, the pulmonary hypertension that Ellie has right now would make either operation likely to fail.  I’m pretty terrified of the trach… but hey, I was terrified of the NG tube before it was a part of her “normal” 2 months ago.  If the trach is what she needs to breathe like you and I… then the trach is what she’ll get.  Dr. Hirsch did say that if we’re not comfortable with trach care, we could stay on the 3^rd floor for a few weeks until he does another heart cath in preparation for surgery.  Uhhh… we’ll learn and get comfortable, I promise!  So the December 29^th surgery date is a no go at this point.  I’m sure we’ll have a surgery plan after Tuesday’s surgical conference… not sure if we’ll have a date then, though.  From what I understand, we’re no longer looking at just one open heart surgery.  It’ll likely be a series of surgeries before Ellie is all fixed up.  Bummer.  But I’m absolutely certain that we’re in the best place we could possibly be right now and she’s getting the care she needs.  Did I mention how impressed I am with Ellie’s ability to turn a 1-hour appointment into an extended hospital stay?  Today is our 10^th day at Cincinnati Children’s and it looks like we’ll have at least another week here before we can go home… and that’s even temporary.  Let’s hope that at this time next year (or 6 months from now) we can look back and say, “Whew, glad we’re through with the in-and-out hospital routine”, right??

How cool is this??  Here is a picture of Ellie's brain from her MRI on Wednesday... it's fantastical!

Bug bug sleeping.  Seriously, this is how she sleeps.  I know it's because she's trying to keep her airway open... I pretend like she's practicing her back bends, though.