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Sunday, August 21, 2016

The First Surgery #JackiesStory

The days before Jackie's surgery went by in a rush. While we were still at the surgeon's office the day of her diagnosis, the doctors were already scrambling to set up a date for surgery. They insisted the earlier, the better. With Biliary Atresia, the longer the bile flow is blocked, the more damage is done to the liver. I didn't know it then, but as I learned more about the disease, I found out that this surgery(called the Kasai procedure) worked best if it was done within the first four weeks of life. The longer we waited, the less likely it would be successful. The Kasai essentially is a surgery to create another way to restore bile flow by attaching the intestines directly to the liver in place of the damaged bile ducts.


                                                         Jackie and Mom a few days before surgery

The morning of Jackie's surgery I felt like I was caught in a dream. We were moving around, gathering her things and making sure we were ready to go.At the same time, I was full of anxiety. What was going to happen? What if something goes wrong? Will her liver be okay?  I remember my husband at the time took a picture of me holding her. I wasn't sure how I felt about it at the moment (though now as I look back, I'm glad he did.) since my mind was racing with such anxiety. 

The whole process of checking into the hospital and arriving to Surgery seemed so detailed, however as the years moved on, it became a second nature to us. We checked in and waited in the waiting room. A few moments later we were called by a nurse to the intake area. We had to change Jackie into a gown as the nurses gathered all her information. We met with so many people: nurses, her surgeon, the anesthesiologist. Finally the time came for them to take her back to the surgical area. 

This was a moment I still remember clearly. There are few times in life when a memory is so clear and so vivid that it seems like it just happened. This was one of those memories, I gave her a kiss and then the nurse gently took Jackie from my arms and began to walk away with her.  As they moved, they became smaller and smaller until I could barely see Jackie's yellow gown. My only thought, even though I knew she would be well taken care of, was , "They took my baby." I tried not to think of all the "what ifs" that ran through my mind earlier. 

The next several hours seemed endless. The doctors sent updates out to us as time went on, but I was still a bundle of nerves. Finally, around 6:00, Doctor M, (the surgeon) came up to us. He told us she was out of surgery and should be waking from the anesthesia shortly. He then talked about her liver. He was so relieved we had the surgery so quickly. The condition of the liver was pretty bad. He said the color was brown. I had a maroon sweater on that day and he said a healthy liver is more the color of my sweater. He reassured us that they will do everything they can to get her better.

After the surgery I began to seek out online support groups. My favorite has always been Class Kids.This is an amazing website dedicated to helping families of children born with liver disease.  I'll talk more about them as the posts go on, as they have been with us for much of Jackie's journey.  

Once we came home a few short days later, I knew we had a long way to go, but hoped this surgery would provide her some healing. Stories I heard about other babies who had the Kasai procedure gave me hope. There were some "babies"  who have gone all the way into adulthood without many complications. As for us, we were grateful she made it through the surgery fine and we took it one day at a time.  

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