biliary atresia post kasai at 102 days after born

[Babyjunten]

my baby is now 50 days post kasai, in Japan Juntendo hospital shizuoka, is on 4 cycle of steroids with prednisolone, before the surgery it was T bilirubin 7,4 and D bilirubin 5,6 , after one week of surgery it decreased to t bilirubin 4,2 d bilirrubin 3,2 . Then in one week got t bilirubin 4,5 and d bilirubin 3,4. So doctors started prednisolone 23 mg Bilirubin down to 3,5 and direct 2,5 , since then many baby is on steroids in two weeks test it increase 4 and then 5 total bilirubin. Then it got down to 4,1 next week again up 4,3 , the next same 4,3 , now on 4 cicle of prednisolone is total bilirubin 3,9 and direct bilirubin 2,8 doctors says they will continue using steroids until bilirubin get down , but at some point they will have to stop it … iam so afraid of what happens is they don’t use steroids if bilirubin get more higher levels does any body have use steroids experience??? Let me see your opinion iam so afraid we are in the hospital 2 month iam with my baby taking care her , they are doing steroid ev. She is without antibiotics like 15 days no fever stool are good color just géstate day green yellow with a little. O cream color, todays stool was yellow green

Sorry for my long letter I would like to know experiences

[Lounges]

That's the story of my life. My baby girl was diagnosed with bile atresia and did kasai only one month after kasai was successful then her number started increasing and decreasing and was on put on steroid and did secondary kasai but didn't work out for us now waiting for liver transplant. I'm also here in japan and we were admitted at kansai hospital osaka now transferred to osaka University hospital for the transplant. I hope and pray 🙏 it goes well for your baby and I wish you all the best.

[Babyjunten in reply to Lounges]

How long took to they decide for transplant, and which where bilirubin numbers? Sorry for asking

[Babyjunten in reply to Lounges]

Thanks you for your wishes hope your baby get well soon too 🙏🙏🙌🙌 may I contact you by instagram??

[Lounges]

I invite you to join liver mums on Facebook.

[Babyjunten]

thanks so much I ll contact you 🙏