Emotions

We had an app. With the liver Doctor on July 26th, since Brycen's belly was getting bigger and his billy levels jumped, I knew we would be admitted. Sure enough, they first put in a PICC line and started IV antibiotics. The next day he got a NG tube (feeding tube) and that was ran continuously. They also decided to ahead and do transplant evaluation. This had been the third time that fluid needed drained. Which lead us to the conclusion that the kasai was successful, however, his liver is so scared  that fluid keeps building up. Which puts him into end stage liver disease. They had to draw blood everyday for about 5 days to get what they needed. He had an echo on his heart, ultrasound of liver, and kidneys. Then Chad and I had to talk with. The pharmacist, transplant surgeon, liver clinic, financial, and social work. At this time we are just waiting for the official call that he's on the list. 

 He was still nursing a little and taking some from a bottle. This slowly diminished. Anything extra besides the NG he would throw up. By Friday he started to not even want to nurse. After several attempts Saturday to nurse, I realized he was done. This was very hard for me. I have always had plenty of milk and my kids nurse so well. I'm just counting the blessing that he got to nurse for almost 4 months. This was very emotional for me. 

We took the girls to the zoo and had so much fun. They got to play on the playroom at primary's while we talked with those we needed. They loved every minute of that. Then they got more goodies while at the liver clinic. They were in heaven. 

The plan was to go home Tuesday, but because they started a new med they needed to observe him. Friday we would be going home. We were in with the social worker when we heard they were thinking about keeping us. For the first time I wanted to burst into tears. When we got back the fellow mentioned his belly had bigger since it was drained the day before. I did not buy this, his belly measurement was just slightly above. This made me so furious! We had been told we could go for the weekend but come back Monday to start TPN and figure out what to do with his belly. After several minutes of trying to convince her we were given That option, she finally went and asked the liver doc and they were fine either way, letting us go Home for the weekend or staying. I was so upset. This was the first time I broke down crying after talking to doctors. Knowing that this was the reality of Brycen's disease, that we will be in and out of the hospital until he gets a transplant. Not knowing when we will and won't be home. Making appointments since you will be going home, to then having to cancel since you will be staying. This was my breaking point of the reality of what lays ahead of us. This is now getting harder and harder on our family. We should be going home after clinic tomorrow and hopefully for a little longer. We have now been here three weeks, with going home for only 2 days.