After 9 weeks, we are back down at PCMC. On Thursday, Alivia really started looking yellow to me. I was concerned. She had thrown up her first bottle that morning, which she doesn't usually do. And she was sleeping a lot more than she usually does. She wouldn't eat more than 3-3 1/2 oz at a feeding which is really unusual for her. So after expressing my concerns to my mom and a couple of friends and their encouraging words, I decided to call the Liver clinic Friday morning. I told them my concerns and her unusual behavior the day before.
They had me take her in to get labs at the hospital that morning. At about 2:30, the clinic called me back and told me that the labs were concerning. Her bilirubin level had more than doubled since her last checkup just 2 weeks prior. They suspected that it was a bacterial infection called Cholangitis. This is fairly common in kids who have had the Kasai procedure. What happens is bacterial gets into the small intestine that is now attached directly to the liver and the bacteria eventually works its way up into the liver causing it to swell or become blocked. It can be very serious if not treated.
They treat cholangitis with an antibiotic administered through an IV. They wanted us to head down right away so they could get it started. So I called Ryan and told him what was going on and then packed our bags and headed down. Ryan stayed home with the other kids.
Alivia and I got down here about 8 pm and they had us get checked right into a room. We have our own room this time, which is nice. They did the usual vitals and then we just hung out until bed time around 10 pm. I had just gotten Alivia to sleep when doctors started coming in wanting to check her out, so she got woke up. I just got her back to sleep from that when they came in to draw more blood for new labs. And then there was the urine sample that they tried 4 times to collect. She was very unhappy about that. Then later they came back in to put an IV in to get her antibiotics going. Finally about 4:30, they stopped coming in so we were able to get 3 1/2 hours of good sleep....or as good as you can get in a hospital. Then at 8 am they started coming around again. It was a long night, but hopefully things will be better tonight.
So far it has been a pretty quiet day. We've just beening hanging out in the room...Alivia sleeping and I've been reading, watching tv, responding to texts. I'm thinking a nap is sounding really good.
After observing her and reviewing the labs, the doctor said her bili actually started going back down a little last night on its own before the antibiotic. They aren't 100 percent sure it is the cholangitis, but unless something else shows up on the labs, that is how they are treating it. She doesn't display any sort of pain and she hasn't had fevers so that is why they aren't 100 percent. They talked of maybe doing an ultrasound of the liver too.
I guess for now, we'll just hold tight and see what happens next. Keep Alivia in your prayers. We don't want this to be her Kasai failing. I'll keep ya posted as time permits.
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