Mid-week update for Week 11

Not too much has happened since Sunday - at least not compared to other weeks!  The Pulmonolgist still feels her lungs are going to be just fine, but he's being thurough and still running more tests.  Just to show it's not all bad news, we'll share this little bit of good GREAT news: There was a concern she could have elevated blood pressure in the lung's blood vessels and maybe heart failure.  So she had an echo (ultrasound of the heart) yesterday, and it showed nothing abnormal.  That's medical jargon for she's okay, so go have adult beverage, mom and dad!  Gotta love them fermented grape juices...

Also this week, it was decided the caffeine trial she had the previous week wasn't actually doing anything for her... So no more prescription cappuccino's.

In other news...

Alexandra has been spending most of her time in a special little chair placed inside her crib.  The chair is called a Nap Nanny, and may be familiar to some of you.  The chair in combination with the crib's ability to slant the mattress has Alexandra's head up 45 degrees off of horizontal.  This positioning draws everything toward her toes, which in turn does a couple of things for her.

1. Sir Issac Newton's little discovery called gravity helps pull her little organs "down hill", which in turn allows her diaphragm to further move down (away from her shoulders).  Recall that the ride side of her diaphragm is paralyzed, so any help it can get is welcomed.  A lowered diaphragm = more lung volume.  More lung volume = better gas exchange.  Better gas exchange = easier work of breathing, which has lots of benefits, but is essentially what she needs to get better (get HOME for the 1st time!).
2. The other way she benefits from having her head being elevated is that it is another "barrier" between her stomach juices and her lung tissue (or more accurately, an uphill battle for the juice to go where it should NOT be going).  As you may recall, kids with EA|TEF have to deal with some atrocious reflux.  It makes her cry (which increases her work of breathing), and then as the juices irritate the lungs, the irritation causes air flow resistance, which further increases her work of breathing.  These are bad.  We hate these.  Booooo....

Suhey and I strongly feel Alexandra has been doing much better on the Nap Nanny.  She used to constantly arch her back with each bout of reflux and cry... then shortly thereafter "de-sat" (loose oxygen content in her blood for a few minutes).  She seldom has those issues any more!  Yay, Alexandra.  Okay, actually "yay" Suhey for finding the Nap Nanny at a local baby store.

Alexandra has been relying on a triangle-shaped mask placed over her nose to deliver her CPAP pressure.  Unfortunately, you can't let the mask stay in place for ever or you risk hurting her skin... or even worse... causing a permanent "dent" across the bridge of her nose.  So we had to change her to another kind today.  It uses two plastic prongs that are essentially shoved up her nose, and safety pinned in place to a ski hat.  Yeah, she thinks it's mid-evil, too; check out the look she flashed Suhey (click to enlarge).

Seeing no pitty from Mom, she tried her sad eyes on Dad (click to enlarge)...

The plan

So Alexandra's plan for now is more of the same: Tincture of Time + help from Issac Newton.  She is due for a bunch of vaccines here shortly... So she may be a little unhappy for a while.  If she's like her Daddy, she'll get a fever with each vaccine...  Wish her luck!