Thrive

 Well, it’s now official.  Annaka is on the transplant list.  Based on her most current lab results and other factors, her PELD (Pediatric End-stage Liver Disease) score is at an eighteen.  As I’ve mentioned, this number is most likely not high enough to get her an organ, and so her transplant team is currently in the process of asking for “Exception Points.”

What this means is that the team will request that she be considered for a higher PELD score based on some specifics.  From the team’s perspective, Annaka is a “failure to thrive” baby, meaning that she is gaining weight very slowly and is doing so only with the help of an N.G. tube that feeds her overnight for ten hours. (To give you some perspective, at six months she is still only thirteen pounds).  She also suffers from ascites, which means her abdomen fills with fluid from the liver failure, making it difficult for her to breath.  To make this condition tolerable until her surgery, she has to have albumin infusions periodically to remove the fluid.

 These “exceptions,” along with others, make her a more urgent candidate for a transplant than what her score would suggest. Earning “Exception Points” can take up to twenty-one days but is often done within a week.

Regardless, we now live with the understanding that we can receive a call from St. Louis at any time, day or night, and have about four hours to get there.  Upon our arrival, Annaka will endure some more tests and will be screened for viruses of her own.  Based on this information, the surgeons will decide if the transplant will take place.  If so, the surgery will last close to ten hours.  If not, we’ll go back home and wait again.

Throughout the very long wait leading up to this point, many people have approached us with the notion of raising funds, and, for a long while, we struggled with the idea.  After all, we have health insurance and we have jobs. Conventional wisdom would suggest that the time and energy it takes to raise money would be better suited for a family without such resources.

However, after sitting through multiple meetings at Children’s Hospital with multiple people who have much more experience in liver transplants than I do, two ideas stuck out.

For starters, a liver transplant does not entirely fix the problem.   This is a lifetime health issue with multiple components, some of which are not completely covered by insurance.  For example, in order to keep her own body from attacking her new organ, Annaka will need to take anti-rejection medicines for the rest of her life.  This stuff can be enormously expensive; according to our transplant team anywhere from five to ten thousand dollars a year, depending on the specific prescriptions.  Making matters worse, because this medicine's job is to decrease a person's natural immune system, it has the side-effect of potentially turning the common cold, (a pretty standard virus in a household with two teachers and two school-age children) into a multiple-day visit back to St. Louis for observation.  In other words, the bills keep showing up well after the stitches go away.

The second idea that stuck with me, and I’m a little embarrassed I hadn’t thought of it sooner, is that many, many people just simply want to help.  People who genuinely care about you also genuinely want to help you in some way, and a fundraiser is one way to do that. 

I should have known all that, of course, considering how many “How can I help?” queries we’ve received in the last few months.  People do pray, but God answers those prayers on his own schedule, in his own dialect, which can sometimes be confusing to human ears.  Also, some prayers are  answered “behind the fence,” so to speak, entirely beyond our very limited scope to comprehend.  However, many of us need a chance to put some paint on that fence to know we’ve at least done something, to put our mark on a problem in a visually tangible way.

Unsurprisingly, there has already been a tremendous amount of “painting.”  Many of you have already heard of young Lincoln Ervin’s very successful Popsicle stand.  Thanks to the remarkable generosity of hundreds of people, he sold a crazy amount of Popsicles in just over two hours.  Also, just two days earlier, so many people called into Barnes Hospital requesting to be a potential live donor for Annaka’s surgery, nurses finally had to stop taking names.

It’s important to clarify that these two examples do not just represent “feel-good,” isolated incidents, however.  Instead, they are part of a larger trend.  They are testimony to the inherent kindness of thousands of people whom we will never, ever be able to repay, many of whom we will never even meet. Collectively, hundreds of hours have already been donated by family and friends who, just like most people in this country, are all super-busy with their own lives.  

This is all very new to us; very much uncharted water.  At the risk of sounding like a broken record, the entire experience has been overwhelming.  At the end of the day, we’re just very thankful that we get to raise our children surrounded by people willing and able to run a Popsicle stand.