1 week passed after kasai

[Stavri]

Hello all.

My daughter had kasai just 1 week ago. She was 9 weeks old.

her total bilirubin was around 8, AST 1103, ALT 438 and CGT 590 before the surgery.

Today; total bilirubin level is 5.1, AST 118, ALT 112 and CGT 1500.

She is still in intensive care unit and far from her mom. Third and forth day, nurses tried to feed her just a few cc of mother milk per 3 hours. For last 2 days they let my wife to breast feed her 3 - 4 times a day.

Her stool color was green in the beginning but yesterday it started to change from time to time a bit pale.

Our baby looks like totally shocked all the time, and looking like begging not to hurt her.

So hard for us. And it make us crazy that we can not see her. The doctor keeps telling they have to follow her in intensive care unit.

Is there any one whose baby stayed more than 1 week in intensive care unit after kasai? Can you share your cases. Comparing to yours, is everything look normal?

[Bettymay80]

Hi. That does not sound right. Parents Should always be able to see their child. They are minors and you have the right. Which hospital is this? Labs are looking good already. One week is a long time in ICU. Is she on the ventilator? On any blood pressure drips? How much blood did she lose in the kassi? My so was on oxycodone after his kasai for pain. I hope your little one feels better and you see her soon. Babies need to have their parents touch and voice around them. Kangaroo care is really good for them too

[Bettymay80 in reply to Bettymay80]

To answer your question my son was in the hospital for a little over a week. But on the regular medical surgical floor. His kassi was done at 4 months. It took almost ten hours and he had a Foley catheter, and a nasogastric tube for a couple of days. His labs were in the thousands too for liver enzymes and GGT bilirubin Ike 6 after kassi, now it is normal. and took several months to come down. He is a toddler and in preschool and doing well

[MiraMom in reply to Bettymay80]

Hi Betty, glad to hear that your toddler is doing well! What kind of medication is your son on currently? My daughter just got Kasai and I'd like to be prepared..

[Stavri in reply to Bettymay80]

The hospital is in Turkey-izmir. She was not in ventilator. The doctor wanted to follow her in ICU since he told it was a very hard case. She is out of the ICU today morning, thanks God. She didnt loose blood during surgery. Now we are very worrying about her stool colour. It turned to pale green. The doctor told they will increase the steroids. And she has infections in her urine analyses, bacterias... poor girl, only 2.5 months old and she is full of pains and cuts.

[Bettymay80 in reply to Stavri]

I’m glad to hear she’s out of ICU. How many cuts did she get? Hopefully they started antibiotics for her UTI. My doctor recommended pregestimal formula. It helped the liver breakdown the milk better versus breastfeeding. And brought bilirubin down. I think breast milk has long chain fatty acids versus the pregistomal is medium chain. I hope that helps

[Stavri in reply to Bettymay80]

Thank you for the advise. I asked about pregestimal formula to the doctor. He said breastfeeding is ok for now. But it may be needed soon. my daughters stool changed to pale a few days ago. It is so much variable actually. Each time it has different tone. But sometimes pale sometimes bright... The doctor told it is a bad sign and informed about a possible liver transplantation requirement, if the stool color goes not stable :(. I hope it turns to normal soon. Btw they stopped giving steroids. Today is 11th day after kasai..

[Aas1987 in reply to Stavri]

I know how hard it is to watch your baby go through so much pain and all those needles and scans and what not. But just hand in there have faith! One day it will seem like a bad dream that passed away. Stay strong x

[Agastya-sri]

My baby underwent Kasai almost 2 weeks back. He was kept on no feed for 8days and started feed gradually after that. Body takes time to understand the new system that's why it is good to keep baby under observation. My baby came back home 2 days back (after 18days of hospitalization) but I have observed lot of changes in feeding, behavior and crying. I wish your daughter gets through this tough time quickly.

[Lois-Cldf Partner]

HI Stavri there could be numerous reasons for this, and your medical team should be able to tell you exactly what is going on. You can access our resources online on our website:

childliverdisease.org/liver...

[Aas1987]

No matter what the parents should be around their child after such a major procedure. Please advocate for your child she needs your love n her mother’s care. After surgery babies are in shock and need their people. Please please speak up for your child and at least the mother should be allowed there at all times. The hospital has no right to keep you guys away! So sad to hear this