After following up with Sophia’s GI from Milwaukee it was discovered that the time had come to list Sophia for a transplant.  The only thing we had left to do was get insurance approval.  After several days with no approval Steph was determined to make this happen.  After a flurry of phone calls we had a nurse on the phone to approve transplant.  After an emotional call Sophia was denied coverage in Milwaukee, but approved in Chicago.  Chicago is a “Center of Excellence”, so following our original promise to do whatever was best for Sophia we transferred all care to Chicago.  Just one week after the transplant work-up Sophia was listed for a liver transplant in Chicago.  She goes for monthly appointments so that her labs can be monitored closely, as well as checking her height & weight.  Each time, she gets a new PELD score which is her transplant status.  She is currently at a 21 out of 40 possible points. Each time she is re-PELDed, if the number is closer to 40 it means that she is getting worse, but at the same time is becoming more of a priority. If the number increases from the previous time, her waiting time is also reset to 0 days. Getting a new PELD score each month is a two-sided coin. She becomes a higher priority but at the same time appears on the list that she has only been waiting a couple days and not the few months that it has become. I believe the higher score trumps the waiting time though, so that is a plus.

 

One of our visits to Chicago was so that Sophia could get a feeding tube (NG Tube) in her nose to help boost her calorie intake and possibly increase her weight. During that overnight admitted stay, we were both trained how to measure and put the tube back in, in the event that Sophia pulled it out (which has happened multiple times already).

 

While waiting for a deceased donor the testing process began for a living donor match.  On Friday November 8, our world was turned upside down once again with a simple knock at the door.  Our first potential donor was a match.  The emotions are indescribable.  We have been given the most amazing blessing.  An angel is walking among us and willing to help our baby girl!

 

Monthly clinic appointments in Chicago continue as we wait for the green light on transplant from the team.  Even though we found a donor, the Doctor’s need everything to be just right, we continue to wait for the green light to proceed.  We continue on this journey as a family. 

 

The prayers, love, support and smiles get us through this daily as a family.