These are not happy memories, but very much part of our life. I think I will continue each week as I look back on my memories of Anna's days with this disease, as well as her transplant before and after. I have never written it down, so now is the time!
Anna's pediatrician called with Anna's blood test results. It was 7 o'clock in the evening on a Sunday night. I was very surprised to here from the doctor at this time of the night on a Sunday, because he told me to not expect a call until the mid afternoon on Monday. There was great concern in his voice. I remember him saying that Anna's bilirubin was still high (with this being the third blood test since she was born) At this point Anna was 7 weeks old. He wanted us to come in first thing in the morning so that he could give us a referral to a specialist. "There are a few options", he said. He gave us a few names, but highly recommended Dr. Whitington at Children's Memorial. On his referral paper I saw the words Biliary Atresia, and blocked bile ducts. I could still see the green lab order type paper. Holding it in my hand, clenching it very tight so that I didn't loose it for fear of going to Children's without it and them telling me to come back with a new order before the doctor would see me. I couldn't even pronounce the words Biliary Atresia. We got an apt. The very next day to see Dr. Whitington at Children's. Jason stressed the fact that he needed to get the day off of work to come with me, while I didn't think it would be necessary. How bad could it be? Some medicine to unblock her bile ducts and she would be fine! Jason was a lot more worried than I was. I always thought that he overreacted when Mary was sick or hurt, and this was what he was doing. I was glad to hear he was able to get the day off anyway, I don't like driving downtown by myself, I thought. We arranged for my neighbor to watch Mary that day since Jason's parents didn't live close to us at the time. As we drove down to the hospital I got to thinking a little more. This must be something that requires more than just medicine, or my pediatrician would have given it to me, right? I started feeling the knots in my stomach, I started to get nervous about what we would hear that day.
We were called into a room not too long after arriving. First we saw Brian, one of the liver nurse/practitioners. He was great to talk to, and adored Anna. He asked too many questions, a lot that I couldn't answer. He asked questions about the color of her urine, her sleeping habits, her mood...but when he asked about the color of her stool, if it had been light, that's when I knew that they had an idea about what was going on with her. Then a couple more people came in and asked just about the same questions we had already answered. I was getting annoyed at that point, why do we have to answer the same questions over and over again? How many people have to touch her, feel on her belly before an actual doctor came in to talk to us? Finally, after 2 nurses and an intern, Dr. Whitington came in. A pleasant smile on his face was very reassuring to me. I thought all was well, we got all worked up over nothing. Then, he dropped the bomb on us. He told us he was sure it was Biliary Atresia, that if we ran into him anywhere else he would have stopped us. He proceeded to tell us about this disease, and what would come to follow. He explained the Kasai procedure to us, and drew a diagram of what they would do in this surgery. He told us that this procedure doesn't always work, and that she would eventually need a liver transplant. Before any of this Anna was to be admitted to the hospital for a biopsy to confirm his suspicion. It didn't all click with me right away. When the doctor left the room I looked at Jason and saw the fear in his eyes, then we both cried. Brian walked into the room to let us know that our bed would take a couple of hours. We had the option to stay and wait for a bed, or to go home to gather some things, and come back later that day. He must have seen parents like us before because it didn't seem to faze him that we were upset. We told him we needed a minute to talk. He understood.
After he left Jason and I pulled ourselves together and talked about what we should do. We then remembered that Mary was with my neighbor, but couldn't stay there for a couple nights, or however long we would be at the hospital for. We needed to go home and gather some things for all of us, make some phone calls for Mary's school and Jason's work. We had to ask Jason's parents to watch Mary for us, and for, we didn't know how long. As we walked into the lobby on our way out of the hospital at Children's, Jason decided that he had better call work to let them know he wouldn't be there for the rest of today. As he was talking on the phone all terry eyed, I was sitting in the lobby, terry eyed, worried about every one looking at me. I have never liked people seeing me cry. Again, I thought, this place must see a lot of this. The car ride home was very silent, as we were in shock from what we had just had to take in. I sat in the back seat holding Anna's hand, as Jason drove. She was sleeping, and she seemed fine. Was she really as sick as the doctors think? She looked so peaceful, and beautiful.
As we came closer to home, I started to worry about what we were going to tell Mary. At the time she was only 4 years old. How do we explain this to a 4 year old when we didn't even understand it ourselves? How would she react? How would we tell her that her new baby sister and Mommy and Daddy would be torn away from her, but we didn't know for how long. That she wouldn't be able to go to school because she had to stay at her grandparents house. This was going to be hard. As we pulled up to the house Mary was playing outside with some neighbors. So pretty with her long thick hair, she looked so happy and we were about to chatter her perfect world. We brought her upstairs after a brief explanation of the situation to our neighbors. All we told her was that her baby sister was sick, and she had to go to the hospital for a little while. She was very grown up about the whole thing, I know she wasn't happy about having to miss school, but she loved to go visit her Gama and Papa! Of course, we didn't have to worry about my in-laws saying no to watching Mary, they were always ready and whiling, but we did have to explain the situation with them as well. They had a lot of questions that we couldn't answer because we didn't know the answers. Luckily, Brian gave us a some pamphlets to hand out and those came in handy. When we arrived at Jason's parents house with Mary and Anna, we couldn't stay long, we had to get Anna back to the hospital. We let Gama, who was the only on home at the time, read the pamphlet. Her face turned white, she cried, gave us hugs and kissed and held Anna for a little bit before we went on our way. Then, we were on our way.....
Here are a couple pictures of Anna before she was diagnosed:
To be continued, next week....Anna's admittance, and biopsy.
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