Son with BA

[Bentrij82]

Hi, I just joined as we've been out of hospital after our two months old son had the Kasai procedure. The brother of a good friend of mine recommended me this site. He is doing ok. For my husband and I is just getting in the routine of medicines, weighing and just keeping a close eye on his progress. It's great to be back home, it had helped us to think more positively and just enjoy life with our son. We were very thankful that once he got diagnosed things went quite quickly and with great doctors. We live in Zug, Switzerland and will have to continue to do the check ups in heneva where there is a specialized liver center. It's very helpful to read how supportive this network is and how people open up with concerns. Hope I can be of help and also to find some support from you guys.

[Hidden]

Welcome to the site!

So glad things are going well for your son after his Kasai.

Wonderful to be back home... enjoy!

[Bentrij82 in reply to Hidden]

Thank you Sarah!! Yes it's been very good to be back home. I guess has helped him and us to just feel like if nothing has happened. We are slowly getting a routine, getting used to the vitamins and also the formula. He is a happy boy most of the times and that makes my day. Wish you a happy Friday!

[YBiliaryAtrecia]

Hi Bentriji, welcome to the community. I am so glad things worked out well and quick for your boy and delighted to hear he is getting well. My daughter was diagnosed with BA and we had to go down the same route, so I know exactly what you are going through. Please be assured that the people in this community will be very supportive. Things will settle at some point. Feel free to ask any questions.

Stay strong and give your son abundance of love and care. Wish you all the best and lots of prayers. Omer

[Bentrij82 in reply to YBiliaryAtrecia]

Thank you Omer. I've seen the huge support to everyone on this site and is very encouraging and motivating to stay positive despite the ups and downs. He is still stable so that's good but we have to go once a week for check ups, so it's quite busy. Also he wants to be in arms more often. He is still struggling to not vomit after taking AquaDeks but that's minor. How is your daughter doing? Have a great Friday!!

[Skibud]

Hi, hope he's doing well. Our little man is now 5. It takes a while getting into routine with meds etc, but try to think that doing them feels like you're doing something to help him. Hard always being on edge that something will happen, but just take a day at a time & focus on having as much fun each day as you can with him. Remember to also look after you, as us mum's forget that & you need to b well & strong to look after him. Good to know that there is a specialist Hosp in Geneva, as whenever we go on hols, we always look for good Hosp nearby & love Switzerland. In the U.K. They have specialist hosps in Leeds, Birmingham & London. Wonder where else they have them in other countries. Yes everyone here very supportive xx

[Bentrij82 in reply to Skibud]

Hi. does it change the way we support our kids as they grow? Or we just add new ways to the existing ones? I'm happy spending time with my son but in the past few weeks I'm feeling quite tired. I don't take naps during the day as I feel that if I'm around is to be with him, talk to him and play with him; while he sleeps I try to do house work. Lately my husband has been forcing me to take some naps on the weekend. At least now my son is sleeping from 11pm to 6am which helps me feel more rested. I'll start thinking to make a list of good hospitals around, maybe I'll ask at this hospital in Geneva and will let you know just in case. Hope your son is doing ok. Enjoy the rest of the weekend!