Reflections on the Last Day of September

Although ultimately a disappointment, exhausting and rough on the nerves, our most recent trip to St. Louis taught us a few important things.

For starters, EATS, (Emergency Annaka Transplant System) works pretty good.  JaLana picked up the call from St. Louis Children’s hospital around 11:30 with the news:  a whole liver was available; would we be able to make it before morning?  After a brief and frantic discussion, we told them we would be there within a few hours.  JaLana called her mom to come watch the kids, and after talking her way out of a speeding ticket, she arrived in nearly half an hour.  Our vehicle was nearly packed by then, and so we poured a couple travel mugs with coffee and headed west, Annaka awake and very interested in our unusual behavior. 

We made it the hospital before the 10^th floor personnel even expected us, but for a short while nothing needed done besides unpacking.  Soon Annaka’s vitals were checked, she was given an E.K.G. and a chest X-ray.  The surgery, if we were ultimately chosen, would take place around ten the next morning.

Annaka was the back-up.  A toddler waited in line before her, but the surgeon was pretty sure the organ would be too small and Annaka would be a more suitable fit.  Regardless, both patients would need to be ready when the time came.  For the next few hours, as we waited for the morning and the news it would bring, we tried to sleep. 

We didn’t really sleep.  Once morning arrived we contemplated how best to let folks know what was going on.  It made sense to post something online, but we didn’t really have any news except that we were waiting for more news.  Then we remembered that Facebook is the same place where people upload pictures of their meatball sandwiches, so we figured a midnight run to the hospital for a potential liver transplant would qualify as post-worthy.

For hours, literally, we paced around the tenth floor with Annaka in her stroller.  It was one of the few ways we could keep her from fussing, as she hadn’t had anything to eat since a little after midnight.  This actually brings us to the next important lesson we learned.

Secondly, Annaka, like every other human ever, gets mad when she’s hungry.  We should have known that, of course, being as we are both humans and have two other humans living with us.  However, due to her condition, Annaka really hasn’t been truly hungry for the last seven months of her life.  She gets fed continuously for ten hours at night and is supposed to drink four bottles a day.  Her stomach, which is already compressed due to the liver damage, is never empty.

So, later in the day, after finding out the surgeons had decided to put the organ in the toddler, we fed her.  She gobbled up a couple ounces, which is pretty good for her.  Ninety minutes later, though, after waking from her nap, she started crying and would not be consoled. 

“You think she’s hungry?”  We asked ourselves.  “She just ate less than two hours ago.”

She was so far below her normal caloric intake, though, she actually was hungry, and increasingly unimpressed.  So we fed her and, guess what?  She stopped crying, allowing us to reclaim our rightful title as “Parents of the Year.”

Finally, we also learned, or were reminded, rather, that this whole transplant business is just heart-breaking.  We were called on Thursday night because a baby died on Thursday afternoon.  That’s the math.  I often use euphemisms when discussing the future transplant to people, telling them that surgeons would prefer a “small organ” or a “young liver,” as this would be best for Annaka’s long term health, but everyone knows what I mean. 

A baby died, somewhere in this region, and that baby’s liver was put into a toddler less than twelve hours later.  That baby’s family is suffering in a way most of us will never imagine. 

Our own hearts broke a little Friday morning when we were told Annaka would be going home without that gift.  The night had been so long; our hopes had been so high.  Someone, though, would have to miss out.  We were, after all, the back-up.  There’s almost always a back-up.  When the day comes and we’re in front, we might still be passed over for various reasons.  (That’s why they have a back-up.) 

We might do this six more times before Annaka get her transplant.  We might do it once.  Only God knows, and that understanding, for now, must do.