Great to hear about the feeds staying down, and all the other news of Jessalyn's recovery. Isn't she clever! I can remember being in floods of tears (happy ones) when I finally put Rose back on the breast after all those awful days of being on the milking machine. It was like my tears were raining on her head to help her grow! I completely agree with you about 4 Main staff - we fell in love with them for the way they looked after Rose around the time of her Kasai operation.
I'm also excited to read that Winita (Hardikar) is Jessalyn's hepatologist - we love her with all our heart, for all she did for Rose and for our family, and she's just the most brainy and talented person as well.
We had never heard of biliary atresia either before we had Rose! But once Rose came along we found out that a friend of a friend has a daughter with it. Of course we've got to meet a number of parents and kids now, through liver clinic and then through the support group (which is still quite new). Shane and I recently bumped into a woman who is about 30 years old, who had one of the very early Kasai procedures done in Australia. Thank goodness HER Kasai worked, because she didn't end up needing a transplant till she was about 20. If it hadn't worked, she would have been in strife because they weren't doing liver transplants on babies at the time when she was a baby! We're very lucky that transplant surgery has become so much more commonplace now - and by the way, the transplant surgeon is a gorgeous, brilliant man, with a great team. Our kids are in excellent hands in Melbourne, because there's a lot of talent and interest and research about treating childhood liver disease.
Rose IS doing well, not just muddling along, but she's really a healthy little kid - we haven't lost the novelty of it. We're so grateful to the donor family. You're right that her Kasai didn't work. When it failed I thought it was the end of the world - I hovered over her nappies in those early months, almost hallucinating a green tinge in her poo. In reality, the poo stayed very pale - which of course meant that the bile wasn't getting through to her digestive system. You sound so very sensible - you already know that it will be a difficult wait to see what the outcome of this surgery is.
But even if it doesn't work, there are many tricks up the doctors' sleeves. Now that Rose has come out the other end, I can see that the fact that she was one of the few who get very sick, very young, turned out for the best. Here she is with a new liver, and she's young enough not to even remember she was sick. Even her illness before the transplant, scary as it was at times, turned out as an opportunity for our family to have many positive experiences. Don;t get me wrong, it wasn't a bed of roses, and I'd never wish an illness on anybody, but by the same token, I don't regret anything we've been through.
Yeah, I'm sure we'll meet one day Shannon, if not through the group, then very possibly in the waiting area outside Winita's clinic! In the meantime, all strength to you and your fighting little super girl! And don't ever hesitate to email me with any little questions or concerns. If you're anything like me, you'll go through different stages with that desire for information - sometimes I'd kind of "overdose" on information, and felt a bit overwhelmed at the very thought of hearing another experience from someone who was further along the track than Rose was! Other times, I wanted to know everything, and right now!
Even though you're being very well looked after on 4 Main, I know you must be so very tired by now, after this huge week. There's no such thing as real sleep in a shared room, is there?! I hope the ward has cleared out a little for the weekend, and that you have a chance to have a bit more peace and quiet for your birthday, and for the reunion between Jessalyn and your breasts!
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