Exception Points

We missed Wade’s 5^th birthday party.  This was his Spider-Man birthday, complete with red & blue balloons, red & blue cake, running, jumping, and flips.  We also missed Ellyana’s first softball game of the season.  She had a pretty good night, though, going two for three off the pitcher and smacking a solid grounder off the tee.

Or so we’ve been told.

JaLana and I were back at Children’s Hospital in St. Louis while all that was going on, hoping to figure out a way to get the swelling down in Annaka’s tummy.  Three albumin infusions and a blood transfusion later, along with some tweaking to her meds, she’s doing better.  Her mood has lightened, her appetite has increased, and she’s more comfortable sitting up on her own.  This is not surprising, though, considering that her volleyball-sized belly has now been reduced to a more manageable softball-sized gut.

Siblings, I guess, if we want to add to our society’s panache for the war metaphor, are the collateral damage in these chronic health campaigns.  We obsess over the tiny little patient, for good reason, and parents often get plenty of sympathy, but the brothers and sisters sometimes get overlooked.

Fortunately, Annaka’s brother, whom she adores, and her sister, whose hair she likes to pull, are blessed with remarkable grandparents who are so good at what they do they make their grandchildren’s extended stays away from home seem like summer camp.

As of right now, Annaka is waiting for some red tape to be cut before being officially put on the liver transplant list.  Before the infusions, we spent an additional couple days in St. Louis as out-patients, meeting with doctors, social workers, financial experts and other officials as they walked us through the labyrinthine world of very serious medical procedures.

Doctors also had to run numerous blood labs and other tests on Annaka, including some in which she had to be sedated. Unfortunately, because she is such a little girl and such a “hard stick,” when it comes to placing an I.V., she even had to be put to sleep with gas.

Doctors estimate her PELD score, (Pediatric End-stage Liver Disease) based on her labs and tests will be in the teens.  This number will most likely not be high enough to get her a donated organ in the immediate future, but it is a start. Due to Annaka’s failure to gain weight, her need for a feeding tube, and the fact that she needs infusions to keep her belly reasonably sized, the transplant team also plans to apply for “exception points.” If approved, these points are added to the PELD score, which will move the candidate up the list.

Thus we find ourselves at this very weird place.  Instinctively, we want her to get better.  However, we have also resigned ourselves to the uncomfortable truth that in order for her to get truly better, she needs a new body part.  However, in order for her to be eligible for the new part?

Yeah, she actually has to get worse, but that is the cold, hard logic of organ transplantation.  Her bilirubin level has to go up.  Her itching has to get more intense.  Our little baby girl, who still has the heart to smile at every nurse she sees, even the ones who poke her in the arm looking for a vein, has to move closer to the end before earning the liver that will save her life.

So I guess we have started climbing this mountain, then, and like most climbers, we are anxious to get to the top.