Children's Liver Disease Foundation
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Biliary Atresia at two weeks kasai done at 20 days in Miami Fl

Hi our son was born full term and slightly jaundiced however after taking him home his direct was elevated so reccomended ultrasound. BA diagnosis came quick and Kasai done two days ago. Surgeon said his bilirubin is down to a 7 now hopefully that means the drain is working. Waiting for liver biopsy results. Any help or comments greatly appreciated!

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First thing , u have done it in the right time so baby will recover fast.

Strictly follow the medication and have a healthy life

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Thanks so much for the words of encouragement. Dr and surgeon said he is doing great. Started drinking milk no problem 2 days after surgery and nice brown poop!

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Superb

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hii seth, what is the poop clr of ur baby,

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Catching it early is crucial, so good news. Our daughter was diagnosed at 14 weeks, which meant a lot of grief at the time. Keeping them hydrated throughout their life is really important, as we found out when our daughter was 2 years old, it created a real setback then. (all good now:11 years old and very healthy)

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My sons direct bilirubin is now higher one month post kasai. Direct is 5.8 and total is 9 anyone know if this is normal for one month or if this is a sign of kasai failure? Liver enzyme levels are lower than before surgery as well alt ggt

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Hi how is your son? I think that's in the normal range. My son's direct bilirubin is 8 and I think anything up to 11 is considered normal. It can go up and down though. My son is 3 and a half months post Kasai. His liver tests are still abnormal but are stable. They haven't really come down much since his op. He has moderate fibrosis. The doctors tell me he is doing well. Everyday is a worry though.

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Hi!! How is your son doing?

Here at hospital they wanted to wait longer to have an answer on whether the Kasai has worked or not (usually 2-3 months after). Try not to worry and be disciplined with the medicines and just ask the doctors all the questions you have. They should be able to guide you better as each kid is different and progress at different timings.

If he is drinking milk and having normal poo that sounds as a good sign.

What helped me and doctors was getting to know your son as much as you can do you can tell them if he is sleeping more than normal, if his poo changes consistency or color, if he is peeing too much or not, if his pee is too dark, if he is eating well, if he is itchy..... and trust your gut feeling. Usually when I feel my son is not ok then I tell doctors or insist (if he is not showing signs of being unwell) and it turns out he was not ok.

With time you'll also learn more about what hints are with worrying and which ones are good to monitor but no need to worry too much at an early stage.

Please let us know how things are going and I hope it is all going well for you guys!!!

Happy weekend

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hii seth, can you please let me know that what is the stool colour of your baby after kasai? and how long it took time to change baby's stool colour? please reply beacause my daughter also had her kasai just 15 days before...

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