had a kasai at 20 days old but as he... - Children's Liver ...
had a kasai at 20 days old but as hes basm we know were heading towards transplant would love to talk to others post or pre transplant
Hi my son was 6 weeks had his Kasai he to has basm he is now 16 months has had a few hospital admissions in the past year treating him for colongitis , it is very hard but it's good to talk to others x
hiya yvonne thank u for taking the time to reply to my message its been so daunting but were settling in to the routine of hospital visits and meds ext what basm features did your son have?curtis my son has multiple spleens,malrotation,missing arteries and veins and stage 3 ba had kasai nearly 8 weeks ago now all looking good so far but with the damage to the portal vein already moderate despite early kasai 20 days old we know were heading towards transplant and have been told that most basm go to transplat at some poin twe as yet touch wood have had no colongitis but am expecting it at some point is your son on questran? and how did you find weaning? was he absorbing the fat as it wasnt fat that requires little bile to break down sorry so many questions but as yet i havent had the chance to talk to other basm mums xxxx
Hello. I have a BA baby, now nearly 5, and we're heading for transplant list soon. Can't spend much time right now but "talk" soon!
Hi Have a son aged 12 with BA - late Kasai - portal hypertension but very fit ans well - no signs of transplant in immediate future and he just gets on with a relatively normal life!! Stay hopeful...xx
Hi there. My boy had a kasai at 13 weeks which worked but his liver was very damaged. He had a transplant in June (7 months) and is amazing since. We feel very lucky even though we have times in hospital, to have him so well. Transplant changed our world in a good way. It's difficult but so worth the results.
Am so happy to talk to you about being on the list and what goes with it if you ever need. Lots of love and luck!
K x
Hi there
Sorry to hear you are on this rollercoaster of BA. My daughter is 2.5 years old, she had BA Kasai and 7 weeks old and transplanted at 6 months old. Like Sunshine74 transplant changed our world and our daughter now lives a very full and 'normal' life.
Pre transplant was very worrying, the responsibility of looking after all her medical needs felt huge. Making decisions of when to take her to hospital was exhausting, we basically asked for a protocol of when to bring her in (temp over 37deg, pale poo, etc) but you do have to use your instincts and follow through on them. Try and remember you are his mummy first, I felt like I was trying to be a doctor, nurse, dietician, pharmacist, physio etc as well but that is what you have a medical team for.
At the time of transplant she was so very sick it was something we were longing for rather than dreading but still scary. The first 18 months post transplant was a bit bumpy but she is now very strong. She caught up with all the physical and developmental milestones very quickly and without much interventions (she had a little physio to get her used to moving her body again).
You could try to take lots of pictures and keep a journal/diary/blog of his progress, you will be amazed at his achievments and often forget the bad experiences! I write a blog of my daughters progress, please send me a message if you would like to read it and I'll send you a link.
Also try and enjoy him as much as you can, they are only babies for a sort time and it seems a shame to miss out on all the nice baby things because of this horrible disease.
Best wishes
K
Sorry for late reply in getting back to you , my son also has multiple spleens,malrotation he had his Kasai at 6 weeks same as yourself we were told there was a 70-80% chance he would need a transplant though he is 16 months now and all ok but we have been in and out hospital since last year think about 7 times with colongitis they say there is damage to the liver and his liver is about 4x normal size tbh it's just a waiting game it's hard with his mess bloods appoints , he has also got no I've access now so they talking about central line his veins have just all shutndown which is heart breaking when they try to get bloods or ivs in , weaning he was ok I weaned him at 4 months through dietician advise to help him put weight on but he has been great with food he eats normal family food and on cows milk I hope it helps its good to talk to someone else who understands I know it helps me take care xx
thank you everyone kirsw yes please id love to read your blog xxx its so daungting we try and forget about the ba and be a normal family and we manage it till medicine time or poo time or when he feels a little hot and it all comes back hoping this will improve hes only 10 weeks old yesterday and were 8 weeks post kasai so still very early days hoping the reg bowel obstructions improve also as hes in so much pain pooing and passing wind its heart breraking looking at him feel so guilty
