Reflections on October

This October we celebrated our nine-year anniversary.  To commemorate it a few weeks ago, we did what we’ve often done these past ten months and checked into a nice, cozy room at the Children’s Hospital in St. Louis.

On October 12^th, we received our second potential organ call around five O’clock in the afternoon.  Although Annaka and I, along with my mom, had just returned to Effingham from our weekly clinic, we repacked the car and headed back west.  We were in good spirits, though, because, after all, what better anniversary present could we get than a healthy organ for our baby girl?

Adding to the providential aura surrounding the potential moment, Gary Barnes, the same minister who had married us nine years prior, stopped by in the evening with his wife Javonda to visit a short while and to pray over Annaka the same way he had done ten months ago in the NICU.

The stars seemed to be lining up.  This time, we were the top pick, not the back up.  This time, the organ came without the frighteningly ambiguous “High Risk” categorization. 

So, after topping Annaka off around midnight with her last bottle before the morning surgery, we tried to find a short amount of rest on the tiny bed hugging our 10^th floor window.

The next morning moved fast.  Annaka’s vitals were checked for the third time, and by 8:00 we were heading down to the O.R. waiting room.  We had signed off on the consent form for both the surgery itself and the likely blood transfusion that would come with such a lengthy procedure.

On a side note, the things you are told before your child goes into surgery are truly frightening, a laundry list of statistical boogeymen, but at this point, what choice did we really have, anyway?  She had to have a liver transplant.  The fact that there’s a “one in 800,000 chance she’ll contact a communicable disease through the blood transfusion,” although frightening, is almost meaningless.

Anyway, back downstairs, with Annaka in her weirdly cute operating gown, we chatted with the O.R. nurse and we spoke to the anesthesiologist.  Down the hallway the operating team examined the donor organ itself for compatibility.  All that remained was the final “OK” from the chief surgeon.  We asked the O.R. nurse how often a transplant, at this point, was cancelled.

She shook her head.  “I’ve never seen it happen.  Once you’re down here, it’s basically a sure thing.”

Then, like a scene from the unfunniest sitcom ever, the next moment our surgeon walked into the room.  “I’m sorry,” she began, her Irish accent nearly hidden by the gloom on her face.  “We’ve been looking this thing over and over for an hour now, and I just don’t want to go on with it.  The blood vessels are damaged.  The liver itself looks wonderful, a perfect fit, but there’s just not enough blood vessels to work with to make me comfortable putting it into your daughter.  I’m afraid if we did the surgery she’d be back down here in two days with an emergency.”

Disappointment, at that point, was really an understatement.  It was kind of like…well, to be honest, there’s not really a suitable analogy to go with it.  I guess, imagine you’re a kid, and you’ve asked your parents and Santa Claus and grandma and the lady down the street for a certain toy for Christmas, and each of them said you’d get it Christmas morning.  The big day approaches, and all signs indicate you’re getting that toy.  You’ve even been so bold as to sneak into the closet and you’ve spotted the box! 

Christmas morning arrives.  You scuttle to the living room and find a gift all wrapped up, but it’s the same size and shape as that box you saw in the closet.  You can hardly contain yourself as you rip off the wrapping paper.  Victory!  It’s the toy!  You open up the box, nearly breaking off finger nails in the process.

And inside?

A picture.  Of the toy.

You’re dad comes in and picks up the picture.

“Sorry sport, they were all out.”  He explains before tossing the picture into the fireplace.  “Want some breakfast?”

It was kind of like that, except, instead of everything I just said, it’s a human liver.

Needless to say, the drive home was long, long.  Everything we packed into our car and unpacked into our hospital room had to be repacked into our car and reunpacked into our house.  We tried to make the best of it by appreciating the fact that our surgeon had been cautious; we went to school on Friday and tried to go through the day with our chins up, confident that the right organ was out there, hoping that the third time might be the charm.

Anyone who has gone through surgery knows that one element that makes waiting even more difficult is the empty stomach that goes along with it.  Annaka couldn’t eat anything for about ten hours, but she could get fluids through an I.V.  The problem was, though, that these extra fluids had extended her already-bulbous belly even tighter.

The weekly albumin and lasik infusion the following Wednesday, the 19^th, wasn’t enough to get her comfortable.  Thus, on Friday the 21^st, after a morning of Parent/Teacher conferences, we once again returned to Children’s.  We spent Friday and Saturday night in the hospital for another set of infusions, returning home early Sunday afternoon in time for the annual hayride at Liberty Christian Church.

By this time, Wade had come down with the croup, so he had to be quarantined at my parent’s house while the rest of us stayed in Effingham.

On the last Wednesday clinic of the month, the 26^th, Annaka had to be sedated in order to undergo a 20 minute CT scan of her abdomen.  The head surgeon was becoming increasingly concerned with Annaka’s very unique anatomy.  We returned home that Wednesday and received a call on Friday that yet more tests were needed.  Annaka would need to undergo a venogram; a two-hour procedure, again under sedation, that would focus on the blood movement in and around her liver.

Thus, early Halloween morning, Annaka once again traveled west, this time accompanied by JaLana and her grandma Judy.  Once again she had to be kept off food for about seven hours before the procedure.

Reflecting back on the perilous journey metaphor I’ve used since Annaka’s birth, at the beginning of October, all signs indicated that we were at last approaching the summit of this steep mountain representing the actual liver transplant.  We had no misconception about life after the transplant; we knew that caring for her once her failed liver was replaced would be a challenge in and of itself.  However, after getting two calls to St. Louis within a week of each other, after being bumped up on the PELD scale from a 28 to a 35 to a 45, surely at least this portion of the journey was coming to an end.

Something, though, wasn’t quite right.  The quick battery of tests seemed out of place.  Wasn’t this the kind of data you collect much earlier in the process?  The summit of the mountain, once sunlit, began to fade behind an unanticipated fog.

Then, like an avalanche, unexpected news:  Annaka’s internal “plumbing” as they called it, was even more complicated and broken than they once thought.  They were no longer comfortable doing the transplant in St. Louis.

We were being sent to Pittsburg.