Continued from Last week:
I didn't sleep very much that night. Jason got to the hospital early like he had promised. We waited all day for the results, hoping that we would know early. Still having hope of this all being a misunderstanding, or maybe something a little more simple and easy to fix. Neither of us wanted to leave the room for fear of missing the doctors, so we sat and waited and waited and waited some more. It wasn't until late afternoon when Dr. Alonso came to the room. I had just come back up from getting something to drink out of the vending machine in the cafeteria. They always come when your not there. Of course, they waited for me to come back before pulling us into the conference room. I remember following Dr. Alonso down the halls, feeling as though we were walking in slow motion. I know there were other liver team members who tagged along, but I only remember talking with Dr. Alonso. When we entered the room, the sun must have been setting, because it was blaring through the blinds. ( Gosh, I don't even remember this till now, writing is bringing back so many memories.) Sitting there, clenching my soda bottle tight, we heard the words Biliary Atresia, again. That was it, that's what it was. I don't know what she said after that. We were holding on to the hope of this being something else. It hit us, again, like a ton of bricks. Anna's Kasai was scheduled for Monday, November 12.
We went back Anna's room and I looked at her with fear. Fear for her. We were told that we would be able to go home for the weekend since it was only Friday, so that's what we did. Any time you are allowed to go home, you want to take it. Even if it's only for a day or so. Hospitals are no fun. Our neighbors were also leaving at about the same time, wishing us good luck with Anna, and we wished her the same for her daughter. The mother looked at us knowingly.
Our time at home that weekend was bitter sweet. Jason had to go to work Saturday, and we had to be admitted Sunday night for Anna's surgery early Monday morning. So, we only had one full day. We thought it would be best for Mary to remain with Jason's parents. I didn't know how to handle all of this, and we thought Mary would be worried. Kids can always sense when something is up. She was excited to be spending so much time with her grandparents anyway. Jason had to work Saturday while Anna and I spent some peaceful time together that day. I held her all day that day, took naps with her and got nothing done around the house. Jason's Aunt Mary made a surprise visit, she brought food ( feeding me made her feel like she was helping out, that's the Italian way ), and more information on BA for me she printed out from her computer (I didn't have a computer at the time). While I know she thought she was helping by cleaning my house, washing my dishes, bringing food and more crap for me to read, I just wanted her to leave. I was in no mood for company. Anna and I needed this time together, alone.
The next thing I remember was handing Anna over to the nurse on the morning of the surgery. We didn't even meet her surgeon before the surgery, so I felt like I was handing her to a stranger. Well, I guess really we were. I didn't know anything about anybody that would be in there with her and to think of them working on her for hours was very sad to me. I guess you feel like, it's me handing her over, putting her life in other hands, not knowing these people and if anything goes wrong I would feel like it was my fault. It's hard to let other people just hold your new born, you know? The surgery took 7 hours. It was nerve wracking in the surgical waiting room. Again, we didn't want to leave but they told us we wouldn't hear anything until half way through, so we decided to get breakfast. We ran into Dr. Alonso in the cafeteria. She asked if Anna had gone to surgery yet, and reassured us that it would be fine, and that Dr. Superina was the best. We were angry for not having met the surgeon before hand. Why wouldn't they talk to the parents first? It all happened so fast, just like that. Not even one week since the diagnoses. Anna was only 2 days shy of 8 weeks old. Now she is going through an operation, with a surgeon we haven't met. It's scary how fast your life can change.
After we ate, we stayed in the waiting room the whole rest of the time, besides the occasional bathroom break and phone call to Jason's parents. We saw families come and go. We watched the Proud Family over and over again. It must have been a marathon. Neither of us had the attention span to read a magazine. We just sat, and waited. We never heard anything half way through, and I am not sure why we never asked. Maybe I thought we'd be bothering them? I don't know, but it was scary. Maybe they didn't want to tell us bad news, or maybe they forgot about us sitting and waiting? That's what I thought. I don't think it was until an hour before we got to see her, when we heard that it was over, and they were just finishing up and would be bringing her to recovery. They would call us in when they got her settled in. They warned us about what we would see when we walked in to see Anna, but they could never really prepare you for that. We could barley see her, there were tubes all over the place. They had braces on her arms so that she wouldn't pull on anything. She didn't look the same, she was swollen. It was heart wrenching to see your baby like that. Anna stayed in recovery for another half hour or so before we got a room. There were no rooms available on 6 west anymore, so we had to go to stay the 5th floor, and stayed there until we were released from the hospital. I was upset, but I think maybe I was getting fed up with the whole hospital experience. We had to demand that they call the surgeon to come talk with us. We had many questions, and were shocked that we had to hunt him down. I guess we had this crazy idea that the surgeon should talk to the family! Looking back now, we over reacted. Dr. Superina is a great, don't get me wrong. That whole hospital is great, it just so happens that the little things got to us more then because they all happened at once. Between the bad experience in ultrasound, the waiting, not being able to meet with the surgeon before the surgery, and no updates during. Then we couldn't even stay on the floor that we should be on. We were not happy. He came in and talked to us no too long after he was paged. Not very much was said. We would have to wait to see if it would be successful. Once again, we wanted answers right then. We had this crazy idea that he would have a prognoses for Anna right away. We were naive yes, but how were we to know.
Anna was in the hospital for 7 days following her Kasai. She did very well, and everyone was pleased with her progress. It was nice to be able to bring her home. Mary was happy to be home and able to go back to school. Jason went back to work. Anna was feeling good, and her jaundice was clearing up some. Things got back to "normal."
Next week: Anna's first bout of Cholangitis
Sorry for the photo Quality. Since I don't have a scanner, I have to take pictures of pictures.
A pictures of Anna taken soon after coming home after her Kasai
Mary, happy to have her baby sister back!
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