He is now 4 weeks post Kasai and doing really well feeding and gaining weight. I would love to hear some positive outcomes as all I am hearing is negative, I have google it and its just seems so scarey. Xx
My baby was diagnosed with biliary at... - Children's Liver ...
My baby was diagnosed with biliary atresia at 6 weeks got a Kasai at 7weeks, it has been such a scarey and emotional journey.
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Liza12
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Hi, I hope with these next few lines, I can ease your worries.. My son is coming up to 9yrs old and he had his kasai at nearly 7weeks old. He has BA & PH (portal hypertension) and he has had a few hospital stays over the years but not as many as some BA Children. He over the years has swam, played football and now his greatest love Break/street dancing, where he and his crew are national champions, so you see, you can get the positives! As the years have passed he is asking more about this liver disease, and to be fair, does not like it, being different to his friends, but he has been so strong, and we are very proud of him! As parents its only natural to worry, but i hope he continues to do well, if you ever want to chat, please just ask, i would be willing to answer any questions, i made some very good friends through my son having liver disease, its very hard in the begining, it continues to be hard, but you learn to cope, i was very scared in the begining, this forum was not up and running then, but we are here for eah other.
Hi my son has Kasai when he was 9 weeks old and now I am in hospital still I just want know nearly when you understand that Kasai operation went good and its works?
Thanks in advance !
Hiii em from india want to talk with u can i get any mail id or anything recently my son is operated by kasai em sooo worried please need to talk
Hi. My daughter had Kasai procedure aged 9 months after being diagnosed with a choledochal cyst. She turns 13 next week and is just such a joy! She has remained well since her operation so much so that her GP doesn't know who she is! She has danced since the age of 3, is a keen gymnast, plays netball and hockey and really likes to get involved in anything she can. I still remember how scared I was at the time of her diagnosis and operation and found it difficult at first to deal with the uncertainty of the future.I was introduced to CLDF on diagnosis and they have been a tremendous support to me, both in terms of providing me with information relative to my child and providing opportunities for me and my child to meet other families in the same or similar positions. What I would share is that until my daughter was ill I may have been guilty of taking things for granted. Once over the shock of my daughters diagnosis and her surgery I really became very grateful for what I had, even if at times it is scary. I hope you find some comfort in my story. God Bless.
My boy had Kasai aged 9 weeks and is now a four year old with loads of energy who loves school and wrestles with his little brother daily! It's scary but just enjoy the present, none of us know about the future, and don't Google- I learned that early on!! (I keep my worries in a box in my head and have a look in quiet moments.) All the best to you. Keep in touch.
Thank you so much for the reassurance it is just such a scarey and emotional time. How long did it take for the jaundice to go away after the Kasai? We have our first appointment next week since the Kasai and I am just so anxious. So far my wee boy is doing so well.
my son is now 18 years old he is healthy and very active fit person! there have been a few hiccups along the way but he has basically lead a very full life he is very active takes part in lots of sport. he has played on a football team since he was 7! he still plays in competative football! he been on skiing holidays and lead a very full busy life. i remember what your going thru and i kept thinking why has this happened to MY baby! my son is so special! i dont know if its what hes been thru but he has a brilliant positive attitude, he is a placid laid back 18 year old who now is coping with all his mates drinking etc and he cant!! but it doesnt bother him and he goes out and has a blast without drinking! things will get better and you will watch your baby get stronger ... always be positive and make the most of every precious day.... and i have treated my boy as though he was a normal boy and let him do everything he can and let him have a great life! hope this helps.. love to you all xxxxx
Hi, I have a 22 month old daughter with biliary atresia and I remember feeling exactly how you did. There are lots of questions that can't be answered with this condition and it does take a lot of time to get your head around it. Faye had her kasai at 8 weeks old and I made the mistake of google! They told me not to google it and I soon learnt why! Faye has done incredibly well since her op last yr and now there is no telling that she has this! Meds become a regular part of routine and now she doesn't know any different! Faye is a very active and lively girl who is very headstrong at such a young age already! Anytime I feel down or upset I just look at her and think how lucky I am. Good luck to you all keep us updated with littlens progress 
x
Hi. My little girl was diagnosed with ba last year at six weeks old. Had kasai at seven weeks old. I completely understand what you are going through, as I'm sure everyone else on here does! I totally agree with the comments about Google... Only human nature to want to look. But best not too! Our little girl is nearly one and is doing amazingly well after kasai. In time everything does get a little easier and becomes second nature. Hope your little one continues to do well. Much love Xx
Hi, My little boy Daniel is 2yrs and 4 mths old. He had his Kasai at 7 weeks old. He is doing well. We have had one additional stay in hospital since his Kasai. Other than that, he is generally well. A proper little toddler at the moment, into climbing, a very active little boy!
I do get a little more worried with him when he gets taken down by the usual 'bugs' and virus's out there, and we have had a few trips to A&E 'just to be on the safe side' 
....Daniel is a very happy little chap, he knows when he goes to his check up's at the hospital what is generally coming and he is (I say this now and know I'm gonna regret it lol ) a very good patient. just stay strong and positive and we are all need us here if you need us xx
Thank you everyone for all your support, I feel so much more at ease now, so glad I got in contact with children with liver disease foundation
Hi our grandson had Kasai at 19days old he was 5 in December and remains well goes to school and leads a normal life don't look at the illness on the Internet that was the best advice we got from kings .
My son is 19 days and having kasai tomorrow. How is your grand child doing all these yeas later?
Hi. I totally agree with you about the negative stuff you hear & read! Its been lovely to read the positive experiences people have submitted here. My little girl was diagnosed with a choledochal cyst whilst I was pregnant and then with biliary atresia at 6 weeks old. She had her Kasai at 6 weeks and 3 days and we have not looked back! She is gaining lots of weight, is crawling, just on vitamins and phenobarbitol and is developing a wicked sense of humour. I know there may be tough times ahead but we're busy enjoying the good times. Really hope your little boy continues to thrive. xx
Hi,
I just wanted to share with you my experience, I'm 21 years old, and have Biliary Atresia and Portal Hypertension. I had a Kasai at 7 weeks old, and i know how scared my parents were. i grew up such a happy child, and our motto has always been live for today, my condition hasn't hindered me in any way at all. Don't get me wrong i have had small bouts of illness where i have needed to be hospitalised, but me and my family have always tried to look on the bright side and i think with the help of CLDF we have managed that pretty well. Sometimes, i found it hard accepting that i had something which none of my friends had, that meant i had to have blood tests, take medication and visit the hospital once a year, and i was always worried about what the other children may think or say. But once the teachers had explained my situation to the class (with out be being present) everyone was brilliant and always so supportive.
I am now almost done at university and looking for my own place to live with my boyfriend when i graduate, and now i would consider myself to be just the same as any body else my age, just with a slightly more complicated medical background.
I really hope your son does well. Always here for you take care, xx
Hi
I hope your baby is doing well and the your clinic appointment goes ok, it can take some time for the jaundice to clear, we were told up to 6 months.
It's lovely to read so many positive stories and I hope I can add to them, although we ended up down a different path.
My daughter is 2.5 years old and had BA she had the Kasai in Leeds at 7 weeks old, I found myself checking her skin (and poo!) colour many times a day after her kasai
After doing well for a couple of months her liver deteriorated and she had a transplant at 6 months old. I'm not going to lie it wasn't an easy road, at the time I thought transplant was the worst case senario and I grieved for the wonderful life we hoped for her. But that was 2 years ago and I now have a truly wonderful, interlligent, kind, gentle, slightly bonkers, wild toddler who has an AMAZING life. I don't want to add to your fears but even if transplant is in his future he will still have a great life.
Yes things aren't always simple, we do still go to hospitals more regularly than we would like but I think all she has been through will have a positive effect on who she becomes. I'm a 'googler' too, I find it easier to prepare for the worst and hope for the best but everyone is different and you have to learn to cope in the way that suits you best. My advice would be to take every day at a time, I think it took me a full year to come to terms with the BA diagnosis. But there is light at the end of the tunnel, whichever one you end up down, you will become an expert in your childs health and always follow your mummy instincts, they are normally right
best wishes
K x
Hi, my baby was diagnosed when she was 9 weeks old and had her Kasai on 19th Dec 1991,aged 10 weeks. My world ended when she was diagnosed and it was an extremely difficult decision to consent to the op. as we were told there was very little chance of her surviving let alone it actually working. initially we took a day at a time, too frightened to look ahead or make plans. Each hospital appointment gave us hope...as we were told our next appointment was in 3 months, this meant she couldn't be too poorly as the doctors felt she did not need to be reviewed for 12 whole weeks. The appointments became a way of life. You hate the building as it brings it all back to you, but you worship the people who saved her life and hold your hand whilst you travel this difficult path in your life. I returned to work to try and get something normal in my life, but she always came first. She went to private pre- school nursery. The staff were very gentle and caring and i asked that she be treated like the other healthy children. I asked the school to get in touch with the Liver Team, so they had some insight into her condition.At primary school she was given her own beam bag in a quiet area , as she often needed to have a little nap.
Medication and hospital appointments, blood tests and investigations become part of your life. She has been admitted to hospital several times. But we are extremely lucky.She is now a lively and very active 21 year old, in her final year at University.
Since her diagnosis, I have lived each day at a time, being thankful for each day I have been blessed with my precious baby girl. It has been a difficult journey, always afraid, often lonely and the responsibility has been overwhelming. I have had faith and the love and support of my husband, parents and close friends. Enjoy each moment you have and live life to the full, live for the day.
I have always encouraged her to lead an active life, taking part in as much as possible... tumble tots, gymfants, trampolining, swimming,gymnastics, drama lessons ballet, ice skating, brownies, guides ... not all activities lasted long, but I never said no. Imagine how excitied i was when she received her Gold Duke of Edinburgh award from Prince Phillip.
I have to admit I am now paying the price for spoiling her rotten
I have a beautiful daughter whom I love more than words can describe. I am proud of her achievements and how she is adjusting to adulthood
It is hard and the pain in my heart is always there {.seeing your child suffer is undescribable}
love your baby and be there for them and live life to the full. you have been given a special child and you will find the strength to love , nurture and protect them with all of your heart.
claresmom
Hi. Such a scary time, hope you are all ok. Our daughter had a kasai op at 5 weeks, she is now a very lively 6 year old. She has lots of questions about BA and we are really open and honest with her, which seems to help. She is full of life and full of fun and we have learnt to take each day as it comes..one short hospital stay when she was 3, apart from this generally well. I would avoid the net if possible, I find it just scared me so much, and got me down! life does get easier, hang in there xx
It is wonderful reading all the positive stories. things are so different now to when I was born, I would be one of the oldest people with choledochal cyst /biliary atresia. i had my first op at 3 weeks old , a kasia wasn't invented untilt he following year by the japanese surgeon. My Mother was only 17 and it was a huge shock to her, she was even accused of not lookig after the baby from her Mother and received little support from her family, there were no agencies. Instead I was lucky enough to have a surgeon who had to think on his feet during world war two and he cut off a section of the gallbladder to use as a tube to attach to the choledochal cyst to the duodenum. I was in and out of hospital with cholangitis until age 4 when I had another op as the first tube had narrowed. this lastest until I was 13 when I started to have cholangitis again.unfortuately , my Mother had a number of bad situations with doctors who did not want to touch me or would tell her I would 'grow out of it' a popular saying of childhood illness at the time. I have to say that even through those well years my Mother had made me feel like there was a dark cloud hanging over me waiting for things to go wrong again. When i needed further surgery at age 21 there was no longer anyone capable in New Zealand and we had to go to Britain. We were our surgeon was twenty years ahead of his time and babies still die born like me, this was in 1981.
Unforunately, I had complications of ascites, gangrene in my scar again-it happened as a baby, and acute pancreatitis. obviously I had portal hypertension. There were two miracles, the birth of my daughter when I was 24. i was the 23rd woman in the world with secondary cirrhsosi to survive and by the time I had roux en y surgery similar to a kasi at age 29 they found the cirrhosis had gone which is extremely rare. We had a little girl in Nz with a bowel disease which had damaged her liver and she could not have a liver transplant, she was sent home but a year later they found the cirrhosis had gone--a miracle. There will be other rare cases around the world.
Unfortunately 4 years after the surgery I started to get pain which became so regular it was everyday 24/7 of varying degrees. It has taken 17 years to get a diagnose of bacterial over dose and another three surgeries. One was for two hepatic ducts which had narrowed the other two trying to figure out what was wrong done at Kings in London when I was living with my daughter for 4 years. I came back to NZ to get more emotional support a year ago, I'm going to write up what happened on another page as a warning to people about doctors listening but hopefully I will get on the liver transplant list later in the year otherwise I face another ten years of this.
The computer printed the above before I had a chance to finish positively. I'm so very pleased to read such positive stories and that things are better for children plus their parents and that there is so much support at least in Britain and the USA are very good too. As a parent myself I know how distressing it can be to have your child ill with any sort of serious sickness let alone something like this. As a young adult at 21 I had a huge need to read what on earth had happened to me to try and make sense of it but it would be very unwise to read the information when your child is relatively well after surgery, it would cause needless worry. I have tried as an adult to make sure I thoroughly know what can go wrong as so much has happened to me perhaps because I never got a Kasai in the first place. It took 20 years for that surgery to become the main operation done for this condition around the world so I have read. I sincerely hope all your children continue to stay well.
Hi, I'm so glad I found this our baby girl was diagnosed with biliary atresia at 15 days old and has her kasai at 18 days she was found to have cystic biliary atresia. We are taking her home today (6 days post kasai) and are extremely excited and anxious. Google is awful our team of specialist nurses told us not to research on the Internet!! It's lovely to hear how many of your children had the op and have progressed as a 'normal' child. The first tree weeks of our daughters life was the happiest and saddest time of our lives but I'm just glad we are now moving forward. Fingers crossed all will go in the right direction. Xx
Hi everyone, my name is Louise Currie, I was born with Biliary Atresia and was given the kasai operation at 6 weeks old. I was the first in the uk to survive after having the kasai operation, thx to Edinburgh Sick Kids hospital, and im now 28-almost 29! I havent ever had a liver transplant and have even had a daughter who wil soon be 8 years old. Its different to live with this BA and the other stuff, but i manage. Im happy with a family a dog and a full time job-as normal as anyone else! Please if any one would like to chat about this pls dnt hesitate to contact me, id love to hear from others with BA stories. Thx
Hi Louise,
It gives me so much hope to read your story and about others in this blog.
My beautiful baby girl is 4 weeks old and she's been diagnosed with possible BA and going in for Kasai this Tuesday. I really hope the surgeon will do the colongiogram and confirm no BA.
GodBless
Omer
Hi there, I do hope she has the all clear, but please dont be worried if she does have BA. Im so normal no one even knows! Lol trust me its not a life sentence at all and i still do everything i want, no limits! Let me know how she gets on anyway regardless of the outcome. Take care. Louise xxx
Hi there. My baby just turn 3mos old. She just had a kasai last week. She is about 2mos and 19days when she had it. Now we are out of the hospital...but fear still on me about what lies ahead of us...ahead of her..
Can you share your experiences and precautions that I must observe from this stage on.
Since you had the kasai, what are the complications you had? How many times you are hospitalized?
Hi Louise, my girl had BA in the end and had to go through Kasai last Wednesday. She has bounced back well. We might go home today from the BCH. Just need to do a couple of tests.
Does everyone post Kasai will get cholangitis? Is there anything we need to watch out?
Hello, sorry to hear that. No , i have never had cholangitis. I think im lucky though as most people i have chatted to here have had experience with cholangitis. I hope she continues to do well and surprise you with her strength. Good luck for the future , and please feel free to ask me anything at all, there are no silly questions xxxx
Thank you so much.
Did any of the medication or steroids you had post Kasai cause any trouble later in life.
As far as i know nothing is a result of the medication. I have Hyperspleenism, portal hypertension and eosphageal varices but all of these are a direct result of the liver - not meds. sorry if thats not much help. xxx
Hi Louise, may i know if you have a specific dietary requirement because of the condition? Or do you have to take more meds / vitamins?
My daughter has just went through kasai procedure and currently in recovery.
Aww i wish her a speedy recovery no specific dietary requirements now- not at all. I am a good eater a nice mix of everything and I have a VERY sweet tooth I have read things about BA people not being able to digest fatty foods as well as others and also that we are supposed to have a high metabolism.... I don't believe either, I haven't found it to be true for myself anyways, but everyone is different. Hope that helps-please ask me anything you like
Hello my son is 8 year old. He was diagnosed with biliary atresia at 5 weeks, had the Kasai procedure at 6 weeks old. He has not had any major issues since. No hospitalizations, just follow up visits. At our last appointment his platelet levels dropped lower than usual. I was wondering if this has happened to you and what would be some advise you can share? He has portal hypertension and an enlarged spleen. He may have to undergo an endoscopy to determine if he has any varices. Are your white blood cell counts normal as well? His are low. Thanks in advance for any info you can share.
Yes but nothing was detected until I was 17 and attended the 'adults' hospital, I had hypertension with oesophageal varices and hypersplenism. I didn't even think/feel anything wrong when this was diagnosed so for me no symptoms- it just hurts after banding is done for the varices, but nothing major. Hope this helps you Louise x
Were your liver function bloodwork normal after the Kasai procedure or were they always elevated. My sons are always elevated but have been at the same levels for years. He also has no issues or complaints. He feels fine the lab work is the only way to know if there is an issue. Both his liver and spleen can be felt as enlarged on examination but they ha ent gotten worse. Also did the doctors ever give you restriction with activity? We were informed at the last visit he cannot play any contact sports. Thank you for getting back to me. I know every person is different you are the first adult I have communicated with who had biliary atresia. Every other person I have encountered have either had a transplant or are no longer with us. It is encouraging to know their are adult survivors like yourself.
Hi everyone, my name is Louise Currie, I was born with Biliary Atresia and was given the kasai operation at 6 weeks old. I was the first in the uk to survive after having the kasai operation, thx to Edinburgh Sick Kids hospital, and im now 28-almost 29! I havent ever had a liver transplant and have even had a daughter who wil soon be 8 years old. Its different to live with this BA and the other stuff, but i manage. Im happy with a family a dog and a full time job-as normal as anyone else! Please if any one would like to chat about this pls dnt hesitate to contact me, id love to hear from others with BA stories. Thx
Hi Louise, good to hear you are doing great & have a lovely family. You give me hope for my 4 month old girl , Kasai at 7wks. Doctors say she will need a transplant as her liver has cirrhosis & she has portal hypertension. Right now we are fighting through her first episode of cholangitis which got botched due to a misdiagnosis :((. Did you also have many episodes of Cholangitis? What was the health of your liver post Kasai?
Thank you- my 9 week baby boy is having his kasai treatment today in Leeds. You've made me feel a bit more positive about the outcomes. I may be back with more questions- glad ive found this xxx
Alison hope your wee boy got over his Kasai its such a worrying time. My wee boy is 5months post Kasai and so far all is well its such a worrying time, don't be afraid to ask questions this is a CLDF is a fantastic website and great support
Hello Liza, my girl had a liver transplant in Australia Sydney due to bilery atresia and is now 5 years old doing very good.. I hoes that your babe does we'll stay postive
My daughter 5 week old will going to have kasai on 29 Oct 2014 please pray for her and I love this forum
my friend told me that her brother had this operation he is 29 years old now fit and normal. without transplant
My daughter 5 week old will going to have kasai on 29 Oct 2014 please pray for her and I love this forum
my friend told me that her brother had this operation he is 29 years old now fit and normal. without transplant
I know this is an old post. But my name is Raelynn. I had the Kasai at nine weeks old. I just turned 20. Though the last two years of my health haven't been the best, I am still only post kasai. Ignore the negativity of the internet. Our disease still doesn't have the world's largest amount of information, but when your child is older, some hospitals have research programs for Biliary Atresia, I was in it for quite a few years. Best of luck to the both of you.
How are you now???
Hi, I hope your sons op goes well tomorrow. It's a scary time isn't it. Unfortunately the kasai was not successful for my daughter and she ended up being listed for transplant At 4 months and transplanted at 10 months. Although that was not the route we wanted she is thriving and will turn 3 in April. Try not to worry too much (easier said than done) but they will do everything possible to make the kasai a success. Which hospital are you in? All the best for tomorrow xx
This page is a blessing... My daughter is going to surgery in two days because they have strong suspition that she has biliary atresia. She is 2 months old. Although the symptoms are mild, we dont know what to expect or what the doctors may find. Hope its something soft but if they really find BA certainly these stories help.
hi im 23 living with just kasi. its oissible ignore the internet. good doctors good faith and a positive outlook and your boy or girl will be just fine! if anyone ever has any questions im always down to help keep fighting!
I have three kids 7, 5 and 3 and I can't imagine the confusion and terror that must come from this news. But I will telll you my wife and mother of my three kids was diagnosed with biliary atresia as an infant, had a kasia (before they were popular) and is now a beautiful health woman who runs around after her kids, has a glass of wine (doctor said is fine) and loves life. If me, her or her mother can ever provide any information to help understand her exerpience we would love to help shed light on our experience.
Wow!!! Inspiring story!!!after seeing your post,i am so hopeful for the outcome of my daughters surgery
I know this post is 5 years old however I thought I needed to reply. My daughter had the Kasai surgery 32 years ago. She was so sick and back and forth to CHOP for the first 8 years of her life.
I didn't think she would live to graduate HSBC. She is a college graduate. The Children's Hospital of Philadelphia was wonderful.
Last year my daughter experienced abdominal pain and I called CHOP. The nurse in charge of the Biliary Atresia unit at CHOP.returned my call immediately, after 14 years of no contact.
Sue Peck, spoke to me as if it was yesterday that she had my daughter as a patient. The advice she gave me enabled us to get my daughter to the correct doctor's at UPH.
So if you have a Biliary baby don't despair. It will work out. 32 years later I have proof.
I loved that u gave me the hope when i needed it the most..!!!
Thank you for sharing. Could i ask what was the reason for her illness in her first 8yrs?
Woah!!!! 32 years have passed!!! That sure gave me some hope for my daughter!!!!!!
Hello there,
My daughter is currently just had her kasai on 40 days of life, she will be having her first appointment check up this coming nov. I've been googling about biliary atresia and found your post, how's everything so far? how's your baby now?
My baby is 10wks old and just dianosed with BA and scheduled for surgery tomorrow. Im so scared and nervous and cannot believe this is happening to my family.... so after the surgery, do they have to be on medication for lifetime and if they do, what are the medications? And what are the reasons of hospitalization after the surgery?
I thank you in advance and please pray for my LO 
Hi I want to know how long does the jaundice take to go away after kasai
I was wondering the same thing if anyone has any info. It’s been 2 months for my child and he is still jaundiced. How about you?
Same question.my daughter had KASAI 8 days ago.they havent repeated the LFTs aftr the surgery.pre surgery total was 10. Direct was 9
Hi
Each child is different. It took our child nearly four months. Some are sooner some take up to 6 months. Some never do and have to eventually go for transplant.
Hope and hugs
thank you very much for the reply, I would also want to know regarding stool. My baby is passing bright yellow and greenish yellow semi solid stools it's been 45days since her surgery, how is lifestyle and what should be taken care it would be great if you share inputs on that
Yes it is very gradual. As long as its going down that's great news.
Hi ours was diagnosed and operated on at 14 weeks so you were lucky to get it early. Ours is now 11 years old and very well with hardly any complications. the next 12 months will be hard work, and a great strain on you, so get help when its there. There is a positive outcome, and we believed that when we were told this, so best of luck.
My son had the diagnosed with Biliary Atresia at 6 weeks had the kasai at 7 weeks but it didn't work for him. He is on the transplant list. He is doing well putting on weight stI'll really jaundice his bili lever are 191 last month's have to see what they our when we go the Leeds on the 19 of December xx
My lil girl was diagnosed with BA the day the Kasai surgery was performed at 7 weeks old, 2 days ago. We are still in the ICU... she is stable. Hoping for the best outcome!
Looking at her swollen, with multiple tubes is heartbreaking... we don’t know yet about how her liver is taking the surgery. For now goal is to get out of the ICU and take it from there.
Hello i am new to this forum.how is your baby now??? My daughter of 8 weeks was diagnosed with biliary atresia 10 days ago. She has undergone KASAI procedure 8 days ago. I want to know about diet modifications, any special formula feed as the surgeon says to take the normal formula milks.but i am skepticsl of this.need recommendations and exoerience sharing
Hello i am new to this forum.how is your baby now??? My daughter of 8 weeks was diagnosed with biliary atresia 10 days ago. She has undergone KASAI procedure 8 days ago. I want to know about diet modifications, any special formula feed as the surgeon says to take the normal formula milks.but i am skepticsl of this.need recommendations and exoerience sharing
Hi, it took 45 days for my daughter to be discharged as she had a chyle leak & ascites. She did ok for a month after discharge but had a bout of cholangitis which wasn’t treated fully so we are back for 2 weeks again but from point of view of Kasai she is doing well. Bile is draining and her liver numbers are better. She does have a very damaged liver so will need a transplant at some point sooner rather than later. Will see when the time comes.
She is on formula fortified 24cal/oz and also gets MCT oil 3ml/3 times a day. She is also on some meds.
Hope your daughter is doing fine.
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