When I say Xander was 'listed' and how I felt about it, I'm sure it doesn't mean much to you unless you understand what a PELD score is. PELD stands for Pediatric End-Stage Liver disease. 'End-Stage Liver Disease'. Xander had a death sentence and no one could know how long he would have.
The PELD scores are assigned based on how sick your liver is. They draw some blood and take the results of the bilirubin, the creatinine, and the INR (International Normalized Ratio, which means how fast the blood clots) and calculate your score. There are also things called exception points that will add to your score to help boost the number. You'll get extra points if you're in the hospital or if you have some other health problems as a result of liver disease. Scores range from 6 (low level of illness) to 40 (gravely ill), according to UNOS.
Xander's first score was 25. This was based solely on his blood work. 25 is high. His liver was giving out. It had worked for as long as it could. It was time.
That's what makes tomorrow such a significant day in our lives. It was a day we were given Xander's first PELD score. It was a day we were given hope. Hope that one day soon someone somewhere in their worst nightmare would make the decision to save another.
To celebrate, we are off tomorrow morning and heading to Give Kids the World. There we will visit with another liver family. It's going to be so great to celebrate the day with them, with a family who understands it's significance because they've been there. I can't wait to see how great their baby girl is doing and for all of us to celebrate their lives!
Peek-a-Boo!
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