EXCERPT FROM MASS EMAIL TO FRIENDS
Written from home the evening of the day we first met with a paediatric liver specialist. I was in a shocked state, with the realization intensifying that we were facing a serious degenerative disease.
"Our darling little Rose was seen today by a hepatologist (liver specialist) at the Royal Children's Hospital. She reckons Rose most likely has a serious degenerative liver condition, called biliary atresia. The less likely, and far more benevolent possibility, is that she simply has a cyst blocking her bile duct.
In any case, she referred us to a paediatric surgeon . . . at the Royal Children's. He was very kind, and saw us immediately, the upshot being that Rose is booked in for surgery this coming Tuesday.
The surgeon will have a look at her to confirm what's going on, and will operate according to what he finds. He didn't want Rose being put through unnecessary preliminary tests such as liver biopsy - he wants to get right in there and try to fix the problem.
If he finds biliary atresia, he'll operate to remove damaged tissue, and to join a length taken from Rose's small intestine to form drainage from the liver to the gut. In that way, he hopes to enable bile to drain from her liver - something that isn't happening at the moment.
The surgeon says there's a 50% success rate with this operation, and that the Royal Children's does it as well as anywhere in the world. If it doesn't work, poor little Rose may require a liver transplant down the track.
Of course, this is all overwhelming, but we're coping OK. We're very relieved that things are proceeding quickly - there had been some talk last week of us having to wait 3 weeks even to have Rose see the liver specialist. Now, in 3 weeks time, she may be home from hospital, and on the road to recovery.
I'll be going in to the Royal Children's with Rose, tag-teaming with Shane, of course. The surgeon says she may need a stay of about a week. We're very grateful that my fantastic Mum and Dad will be moving in here, during the hospitalization, to look after Lewis and Hannah.
Anyhow, Shane took some photos of Rose in the bath tonight - I've attached them. We're very much in love with this girl, and she seems strong and spirited."