Things are changing

Friday, June 24, we got labs done for Alivia. I waited and waited all day for PCMC to call me with the results. Finally I called them and they had not received all the results yet, but the ones they had received were clotted so they were kindof inconclusive. I never received a call back that day with the rest of the results. I was a little antsy all weekend wondering where things were after our last hospital stay 2 weeks ago.  Sunday, her belly measured 2 cm larger than it had the last two weeks and then Monday it was another cm larger. This means that she is probably developing ascities. Her belly is really looking large and is pretty hard.

Yesterday afternoon I finally got a call from them and now wish I hadn't of.  The news was not good, not what we wanted to hear.  Her bilirubin level was higher than 2 weeks ago when we went down to the hospital last. It was at an 11.  I talked with Christa, the nurse practitioner, and she said that they are fairly certain that the Kasai is failing. They won't know for sure until we come down next week for her next appointment, but they are pretty sure. So we are now scheduling an extra day for this appointment so that they can start doing whatever has to get done to get Alivia listed on the transplant list. They said a transplant will likely have to happen within a couple of months.  I don't know much about the whole process yet, but I've got some research to do and we will become very educated while we are down there next weekend.

Meanwhile, she still is a happy little girl. Although I could tell yesterday that her enlarge tummy is not very comfortable for her. I will have to make sure Christa knows about this new development and see if we need to get her down there sooner than next week to see about treating this. It is so hard to watch her go through this. I know it is only going to get harder the further along we get. She is going to become much sicker between now and when she can have a transplant. It is so hard knowing that. It breaks my heart. I'm sitting here at 5:30 in the morning typing this because I can't shut my brain off and I'm just crying my eyes out.

I know there is a reason why this is happening. I know our Heavenly Father has a plan for Alivia. It still just breaks my heart that my 5 month old baby is going to become so sick. I also know that we are not alone in this. There are hundreds of other families that are going through this too. I just hope and pray that we will have the strength to endure what lies ahead of us.