Anna's Place: Monday Memories: Anna and Cholangitis

Did I ever tell you about Anna's first bout of Cholangitis

Continued from 2 weeks ago (sorry for the delay, I had to take care of my sick girls all week):

We were very lucky to be able to have Anna home right before the holidays. We sure had a lot to be thankful for come thanksgiving time. Anna came home a few days before Thanksgiving day. She was doing great. I was already getting used to giving her all of her medications, and she took them all so well! We celebrated Thanksgiving with Jason's parents only that year. I was a little weird about germs, and we have a big family on Jason's side. Lots of Italians equals lots of kisses and baby passing. But it was nice.

Our first checkup went good. Dr. Superina seemed pleased with Anna's progress! For a while after her Kasai she was a peachy color! We continued to go for regular checkups at Children's.

Christmas time came, and Anna continued to do well. We all thought we had the worst behind us, convinced that Anna would be in that small percentage of Children living with BA into their Adult years.

It was probably the week before Christmas when I noticed that Anna was getting her yellow color back. When we went for liver clinic they told us that her bili rubin could go up and down for a while. I was disappointed because she was looking so good for a little while, and I didn't want to ever see that color on her again. But, she was still doing well, her belly wasn't too bloated and she seemed to feel good. It wasn't until after New years that Anna started to act as though she didn't feel well. I would be up with her all night, and she would be crabby throughout the day. I took her to clinic, and they still didn't seem too concerned. At this point we were going for more frequent lab draws. One night I couldn't take it anymore. She was up all night, every night, and she was getting more crabby during the day. It took me until she was inconsolably to take her in again. Not wanting to go by myself with Mary and Anna with the way Anna was acting, I went to pick up my mother in law to come with us. I needed that support. It was later in the evening by the time we got to Children's ER. We got a bed in the ER right away. I was shocked. With this being the first time in the ER at Children's, there were so many people waiting, but we got seen right away. Other people in the waiting area were not happy. I heard them ask why we got seen right away when their child was _____(fill in the blank) [Skipping ahead, this is how it always would be when we go to the ER in Children's and we have gotten many evil looks from parents. I swear, if I ever had to the ER and people got seen before me, or my "not so sick" child I wouldn't blink an eye. There are reasons for this] We were seen again by many doctors again. This was the first time that we would meet Dave. Dave was the new Liver nurse/practitioner working with the liver team. He was kind, and took a liking to Anna right away. Well, who wouldn't. We got an IV, blood work and other stuff done I'm sure. Thinking back now, I was fairly calm. A lot more calm than I was the first time we walked into that hospital. The staff was great with Mary, got her some snacks, and put on a movie for her to watch. When we learned that Anna had to be admitted for a biopsy, Jason came when he got off work to pick up Mary and his mom.

I don't remember how it all went down after that, but the biopsy was probably done the next day, followed by having to wait for the results. It turned out that she had Cholangitis, an infection in the liver. We were told that this is a sign that the Kasai is working. That since there is a way for the bile to come out, that means there is a way for bacteria to come in. But, I wasn't prepared for what we were about to hear. Anna would need a Picc line. This is a more long term line than a regular IV. It could stay in for months. She would go home on antibiotics that I was to administer, for a four week course. I would have to learn how to care for the picc line, and we would need to have a home health care nurse come to clean the picc line area, and draw blood. OMG!!!! Are you kidding me. I'm not a nurse. I didn't think I would have to do all this. I thought that was on all of these people here. But, we wouldn't' want to stay here for four weeks. At first I thought, no way, I couldn't handle that, but after learning some from the nurses about how to be sterile and how to flush the line I became more comfortable. I had to have a positive, I can do this attitude, or I wouldn't be able to do it.

Anna stayed for a week between getting the biopsy done, waiting or the results, and getting the picc line in. When we got home it seemed like we were doing something wrong. I guess it just felt weird to bring your baby home with something still attached? But I was confident. I knew I could do this. We were scheduled to have our first box of all of the medical supplies that we would need, delivered first thing in the morning. Our home health care nurse was to be there early too. They sent us home with enough supplies to last us through the night. I was feeling confident, I knew I could do this. The first antibiotic that I gave to Anna was done soon after we got home. She was on two different strong antibiotics, Gentamicin and Piperacillin. I infused it, by hand and flushed her line like I was supposed to. I don't know what happened, but the next dose, due later that night, wouldn't go through. I was taught to never force it, so we headed to the ER. Not being home for even 4 hours, we was headed back. I went all the way back to Children's because I didn't feel that we would receive the same care at our local emergency room. Since it was practically in the middle of the night, I flew. I was worried because she was supposed to be having that antibiotic right then instead of heading to the hospital. I was so upset with myself. Talk about a confidence buster...Did I flush her line with Saline instead of Heparin? Again, we got a bed right away in the ER, and they were able to flush her line out. They had to work at it, looked like I could have done that at home.... We got back home only an couple hours before our nurse go there, and just in time for our huge package of medicines, and medical supplies. Actually, I think it was two boxes. We also got a pump for one of her medications that took a half hour or so to infuse. Man, I was tired, and talk about overwhelming.

Our lovely nurse came just in time. She gave me some more information on how to care for Anna with her picc line, and answered many questions that we had. It was a tiring schedule of 7 infusions per day, and having to wake up in the middle of the night to administer them. After a few days, it became easier though. Like clock work. We didn't have anymore problems with her line getting clogged. We managed to stay away from the hospital for 3 weeks while she was getting her antibiotics and blood work at home. She never seemed to get better, and it seemed as though her jaundice got worse by the day. I did what I was supposed to do. I used to blame myself, thinking maybe I wasn't sterile enough, or I didn't infuse her antibiotics right.

Anna was admitted to the hospital February 6th for recurring cholangitis, and after only 2 hours on the floor, she was admitted to the PICU for being Septic. More on that next week.

Here is a picture taken by Anna's home health care nurse: