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Saturday, August 6, 2016

The Diagnosis #JackiesStory

Before we knew it, we were on our way to Jackie's appointments.  The first stop was in Radiology for a Hida Scan, a test that can diagnose diseases of the liver and bile ducts. She had to get an IV with fluid that would make the liver and bile ducts visible in the image.  

After that, we went to see the GI doctor. At this point we were getting tired and were continuing to hope that this was all about the doctors being cautious. However, those hopes diminished when we visited the GI. As we waited in the exam room, I changed her diaper. Right in the middle of that, the GI walked in and asked to see it. The contents were a pale white. He expressed concern at the coloring and told us he was going to send us to the surgery office immediately. When he returned from contacting Surgery, he briefly explained that the white color in her diaper was a sign that there was no bile leaving her liver. 

I was too confused and shocked to really react to what I was told. At the moment, I was still experiencing the situation, and everything was moving too fast to react right away. I do remember that as we pushed her stroller across the parking lot to the main hospital, I had an epiphany. (I had lost my job at the end of my pregnancy and was questioning my direction in life). It was at that moment when I knew. This was what I was here for. This is what I was put on this earth to do. 

Jackie Pre-Surgery


Once we arrived at the surgeon's office, things seemed to move even faster. Doctor M already had all her information in front of him. He explained that what our baby had was called Biliary Atresia. In my head I wasn't even sure I heard that right. "Billy who," I asked myself.  The doctor explained it in concrete terms for us. He described it as imagining you are trying to get out of your front door and instead of an open door, there is a brick wall. There is no way for you to get out. He explained the bile ducts (the doors in the liver) are blocked (the brick wall) and can't exit the liver.  He explained this leads to scaring and infections. I think he knew we weren't ready to process the fact that it can also lead to liver failure.


He then told us that he wanted to do the Kasai procedure, a surgical procedure to help restore some bile flow in the liver. He told us that it may not be a permanent fix. He had us wait in the waiting room as he scheduled the surgery. He said it worked best when done within the first month of life. Yes, this was all before she was 4 weeks old.


I don't remember much from the blur of that day, but I do remember getting a call from the pediatrician's office while we were still at the surgeon's office. The doctors and the surgeons were telling me that this disease was not my fault or the result of anything I did when pregnant. 

We finally left the surgeon's office. I'm not sure how I was able to sleep that night. I was still processing the last 3 days and nothing seemed "real" at the time. I knew I had to get some rest, though because we had to be ready for the surgery that would be happening in just a few short days ahead. 



Up Next: The Surgery

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