Shannon, it's very grounding for me to read a real message, rather than a "Pollyanna" style message that glosses over what you're really feeling.
There's a lot I could respond to, and I know that Jessalyn has some other health hurdles to jump apart from the liver one. Maybe I can just focus on the liver angle?
This will be disjointed, but I have a few points to mention after reading your post and the lovely ones that followed.
First, regarding what you've said about biliary atresia being chronic, incurable, and life-shortening. I know that those words are hair-raisingly frightening, and I went over them time and time again in the early days of Rose's experience. I used to also find myself repeating the words "biliary atresia" over and over again in my head at night, so that I felt I'd go crazy.
Can I say though, that I have to disagree with the second two words as accurate descriptions of this disease? I say this, because of transplantation as a treatment option - it's not pie in the sky: it's very real. They did the first paediatric liver transplant in Australia in about 1988, I think. Before that, unless the families could fly overseas for a transplant, then maybe "incurable and life shortening" were words applicable to children whose Kasai had failed. But today, a successful transplant means that the child no longer has biliary atresia, and there's no evidence that a child with a successful transplant will have a shorter life. (Obviously, transplant hasn't been around long enough for us to know what the life expectancy is. As one of the gastro doctors at the RCH said recently at a seminar, there's nobody around who had a liver transplant 80 years ago, so we dont know!
Second, regarding the liver transplant waiting list: rest assured that if there's a very sick child on the list, they go straight to the top, across Australia and New Zealand. There are different levels on the waiting list, and I can't remember exactly what the categories are.
But Rose was on the waiting list for just 3 weeks, and she almost received a liver on day 21 (there was a problem at the last minute, so the transplant didn't go ahead that time). A few days later her priority was upgraded. This meant that she was (possibly, I'm not sure) number 1 on all the lists across all Australian states and New Zealand. She received a liver transplant the very next day, exactly 4 weeks after first being placed on the list.
Re the "living-related donor" option, we went part of the way down that road while Rose was on the list, in her last week of waiting. Shane was ruled out because of some arthritis medication he'd been on for a long time, so I began to be "worked up" as a possible donor. It was a bit iffy, since I'm no spring chicken, and had also been rather too fond of white wine over a number of years. Still, the doctors agreed to begin looking at me as a very last resort - Winita actually said that the doctors are a superstitious lot, and any time in the past that they had had a parent start to be looked at as a donor, a liver donor had come along.
We were told that in Australia, while they have done living-related transplants in the past, transplant teams do prefer not to go the living related donor way these days, mainly because of the risk to donors. The transplant teams meet every year to discuss their policy on living-related donation, and so far, the consensus is that there are far more advantages in using donated liver tissue from deceased persons.
In my case, they vigorously tried to discourage me from being a donor, because I'm already a mother to older kids. They mentioned the risk of me not surviving the operation, or of ending up with a liver disorder myself as a result of damage during the operation. Evidently some living-related donors have gone on to require a liver transplant. All this stuff we were told was a bit discouraging, but they said to us "Don't worry, we reckon a liver will turn up."
And it did! That's how the priority system works - really, the transplant team have faith in the system for good reason. Kids on the list get blue-ribbon treatment, for example, they'll be offered the livers from the youngest possible donors, receive the best "plumbing" (arteries, veins, ducts, etc.) I'm not saying that we don't need a much higher organ donation rate in Australia - of course we do. Then those who are not so seriously ill could also have access to transplants earlier, and get on with a normal life.
You're such a long way from that, and every colourful poo is a sign that her digestive system has what it needs to process the food, and for Jessalyn to grow.
OK, we're packing to go up to NSW for a few weeks, so I need to wind this up for the moment. I'll have internet access though when I'm away, so please, hit me with any questions!
BUT one practical idea I have right now is that I have a video of the head of the Victorian Liver Transplant Unit, Bob Jones, talking in April to our support group, all about paediatric liver transplantation. The video shows him giving a talk, then fielding questions from parents in the group. Also in the seminar were the RCH paediatric liver specialists Arnold Smith, and our own Winita was there for a little while. It's quite a long video, going for almost 2 hours, but my goodness, it's so positive! I'd be so happy to post it to you if you'd be interested in having a lend of it. I bought it last week when I was in at liver clinic (they charge $10 for a copy, just to cover costs). Maybe you could one day order your own copy, but in the meantime, I reckon it could be just the ticket for you to listen to Bob talking about outcomes for these kids. He was the one who did Rose's transplant, and we got to know him very well in the months leading up to her transplant. He is simply a beautiful and wise and talented man. I'd love for you to see what I mean, so please, send me a quickie reply if you'd like me to bung the video in a postbag.
I'm leaving tomorrow, but I'll bring the video with me on our trip, and I'll keep a check on whether you've left me an address to send it to, and post it. (Just email me your postal address. My email is lynnecoleman@optusnet.com.au) Maybe you can then just bring it back in to liver clinic one day - no rush though.
Hope to hear you say "yes" - and I hope you get to meet Bob one day so you can feel some of his positiveness about biliary atresia. But today, you're SUCH a long way off all that! Jessalyn's pooing in colour after all! Rose never did - they're very different kettles of fish.
I'm not saying "buck up", by the way - these teary days are very important - I cried rivers and rivers, and I cried again when I read your words describing your love for Jessalyn. Yes, that's exactly right: we love them SO MUCH! Let's wallow in this love - there's nothing on earth like it, and the intensity, while it hurts sometimes, is something non-parents miss out on terribly. You're doing your job brilliantly - love and cuddle that gorgeous little girl.
Much support,
Lynne (PS Shane is also very concerned about you all. He keeps popping in and saying "have you mentioned this. . .?!" etc.)
