Sketches, Part Two

The last time I wrote specifically about Annaka, I used a cave analogy to try and explain how we felt about her diagnosis of Biliary Atresia.  Caves are dark and unfamiliar and you bump into things, which was basically what we were doing.   We were learning terminology and reading about other children who had gone through a similar situation, scratching our way through weeks of dank days.

This past weekend was spent once again at Children’s Hospital, and minus the needle pokes for her and the absurd sleeping conditions for us, the experience was not terrible.  This is a very good place with very good people.  The food is actually tasty and there is a garden on the eighth floor that, now that the weather has turned, looks like a sketch out of one of God’s rough drafts.

The real takeaway from this weekend, though, was that our time in the cave has ended.  The doctors with their tests and experience have reached down into this pit and have basically said, “Here’s the deal.  We think we can get you guys out of this mess, and this is how we’re going to do it.”

Annaka needs a new liver.  Her current liver is kind of like a boat with a small leak in it.  The boat is being a boat; it’s floating, but it won’t float forever.  A day will come, probably within the year, when she will need a transplant.  This transplant can come in different ways.  Ideally she gets a young liver—and yes, that’s morbid—that will age with her.  This is not like ordering a prosthetic limb, though, and she may get in a situation where she will have to have a live donor.

In this predicament, a living person, one who matches her blood type and has passed a battery of tests him or herself, will have a surgery to remove about twenty-percent of their own organ.  This piece will then be put into Annaka, and, over time, will become her liver.  Weirdly enough, the donor’s liver will also heal itself and become full again.

This future hospital stay for Annaka will be heavily influenced by an assortment of specifics:  how well she heals, whether or not the new liver is rejected by her body, how she adjusts to the new medicine.  The best case scenario is the new liver works and over time her hospital visits can be scheduled twelve-months out.  The second-to-worst case scenario is the liver fails and she needs another transplant immediately. 

Between those situations lies the more plausible: two steps forward, three steps back; medicine tweaking; clinics, infections, sleepless nights.

The cave, then, has been replaced by a mountain looming in the distance.  This is our walk, though, and to get there, in the meantime, we have started a regimen of night feedings designed to increase her weight. She takes four four-ounce bottles a day and then is slowly fed the same amount through an NG tube at night.  Thus far she has gained a few ounces and seems to tolerate the whole thing the same way she has tolerated just about everything, cautiously smiling at the world opening up around her.

As I’ve said before, this is not and has never been a struggle on our own.  Along with the gifted doctors, we have been inundated with prayers and the people behind them who have also helped out in very tangible ways:  gift cards and food, folded laundry and mowed lawns.

As you might guess, a live liver donation must be done voluntarily with full understanding of the risks.  So far a few people have actually said they’d do it, and not in a, “Hey, don’t know if our blood types match but I’ll say I can donate so I can sound heroic,” way, but in a “I am O positive; I love this girl; sign me up.”

We will return to Children's soon for more tests and meetings, and at that point she will most likely be put on the official transplant list.  The distance between us and the mountain, at that point, will be left up to God.