Twist & Shout

I'd like to believe that Jason and I are not those people who insist upon the superiority of our own opinions.  Sometimes we hate to be in the right, because our glass isn't half-full of kittens, lollipops and sunshine.  It's full of facts and evidence as we perceive them.  Our drive to protect our fragile daughter has tippled the cup past the overflow point. 

Today was a confirmation that refusing to rest on a flimsy, unproven diagnosis was the right thing to do.  As a result of being insistent on taking a further look at her GI, we now have a confirmation that she has been experiencing symptoms that presented much like her previous intermittent blockage because she, ahem, IS SHOWING SIGNS OF A CURRENT INTERMITTENT BLOCKAGE!!!!

This time it's her stomach.  During the process of x-raying her progress during the follow-through barium contrasted study, something called a gastric volvulus was observed.  For those of us who dropped out of college to pursue a career in the, ahem, worldly arts, this roughly translates to literally having a turned stomach.  You can find a much better description of the condition and all manner of enlightening diagrams HERE.  The particular kind of peculiar-looking twist she has is of the Organoaxial variety. (Okay, go back to the link and look at the picture.  I'll wait.)

While this condition can prove quite dangerous to life and health, it seems that she has not begun to show typical signs of long-term aggravation -- no major infection, no abdominal swelling, etc -- which buys us some time to discuss treatment options with her surgical team tomorrow.  And let me reiterate how grateful we are to finally have them on board again.  We have never, ever had an issue with their listening skills.  Mad props to the scalpel jocks of ACH.  All we have ever asked is an open ear, and that's bought Ava a lot of good developmental time between surgeries because of parental concerns and preferences that they allowed to be brought into account.  Allowing us to feed her orally instead of pressing on with a routine placement of a G-tube has been a big part of her success thus far.  Oral feeding has given us a good indicator of whether Ava was well or ill and in need of medical attention.  I can't say we would've been as observant without this indicator to trace out these patterns for us.

So I've already written a bit more than I intended here.... guess it's a justifiable excuse to squeeze the last few minutes of my thirty-first birthday from the clock by doing something productive, instead of laying on the hospital chair/bed hybrid and watching closed-captioned Bette Davis movies with a nervous heart tumbling 'round my chest and a Coke float chasing my butterflies.  I have to tell you, the very real potential of another impending surgery for our daughter has me drowning in nervous energy.  So many people have reached out to us in kindness and love, and yet I find it very difficult to even begin to reply to each individual who voices their heartfelt concern for sweet Ava and her parents.  We spend our entire day consumed with pursuing her health and worrying over how quickly she might be losing ground, every spare bit of mental and emotional energy I have is spent on making sure that Ava is so occupied with happy things, she doesn't realize she's in the hospital again.  Maybe I need to pretend that very thing more than she does.  In any case, I'm terribly sorry if I'm being neglectful of anyone's concerns.  Please know that as time allows, I will return to this space in the wee hours as she sleeps and post about her most recent progress in this space.  Thank you for all your love and kindness, truly.  Again, I beg patience of anyone who might want to come in for a visit -- we need most every hour to concentrate on the matter at hand, with our few spare minutes spent on long-distance household maintenance or simply eating and sleeping.  Prayers for our mushmallow are on the top of our family's list of requirements right now, although I know those never cease. 

I love you all,
Ava's Ma