What’s the recovery after post kasai surgery

[tia_80]

Hi. We’re still currently at the hospital. This coming Tuesday would be 3 weeks. We found out our daughter had biliary asteria 3 weeks ago. When she was 5 months. A lil late. But I kept tell the pediatrician that she looked jaundice and yellow. Every few weeks I’d call the pediatrician and said my daughter looked yellow and that her belly looks huge. We go in and she would say it’s nothing to worry about. Everything is normal. So we’d go home. Then finally her eyes started becoming yellowish green. And I demanded to go in. We go into the pediatric office and was seen by a different doctor and she knew something was wrong and sent us to children’s hospital right away. I didn’t think it was anything that serious because our daughter wasn’t fussy. She’s so good. Great eater. Never really cries. So I thought it was a simple blood test then we’d be back home. But we haven’t been home since. My daughter had a liver biopsy done to see how bad her liver is. Surgeon said that if we were to catch her biliary atresia early when she was 6-8 weeks there would’ve been a different treatment instead of the Kasai. But unfortunately she needed the Kasai. So they did the Kasia a week after we been hospitalized. Everything went great I thought. Then 8 days post Kasai her belly blew up and they did a CT scan and said there’s air in where they performed the Kasia and that they need to do another surgery to fix that. I thought the first surgery was scary. But the second was much scarier. So now it’s going on 4 days post second surgery. It seems like my daughter is recovering from the second surgery faster then the first. I’m not sure what to expect and how long the recovery is till we get to go home first. I know that it takes months to see if the Kasai works. But just to be able to go home and feel normal again is a start.

[Agastya-sri]

Hi, i had similar experience as yours, paediatrician ignored initially but later when went to hospital for some tests, we ended up for almost 20days. doctors said its late but he had kasai at 2.5 months of age, recovery after wasnt good as it was the worst type of BA.

Your baby's case looks positive even after late kasai. The only advice i would give is keep a check on poop color & direct bilirubin count, bili should go down after surgery. There is probability of colangitis post kasai, so would suggest to be prepared for antibiotics. Also, check for the type of BA, as there are 3-4 types, recovery also depends on type.

I pray for your baby's good health & sending you all the strength for the tough road ahead.

[MichelleCLDF Partner CLDF]

I'm sorry to hear how stressful this has been for you. Could you fill out our sign up form so we can give you some support and advice? Thank you, Kate childliverdisease.org/cldf-...

[tia_80 in reply to MichelleCLDF]

Hi. We’re not from UK. Can I still fill it out?