“We've had Rose in the Royal Children's since last Thursday, and might be out by about the 16th. She's had some complications of her liver disease (portal vein thrombosis, ascites, varices. She also picked up pneumonia in there!

She's doing OK, but it's looking like she'll be up for a liver transplant early next year. She's not on the official transplant list yet, but her fantastic doctors have told us to gear up for a big year in 2004, so we're fattening up Miss Skinny for a new liver!”

Two days after I had expressed my concerns to Rose’s specialist, we took her in to be seen by the covering specialist.

While I waited to see him, I ran into a staff member from the Gastroenterology Department. I’d met her several times in Liver Clinic. She asked me how Rose was going, and I burst into tears, a blubbering mess trying to explain that Rose had stopped playing, smiling, and that she was a sad little baby all of the time now. She was very kind to me, ushering me into an office, giving me cuddles and a box of tissues.

The specialist arrived minutes later. He took one look at sad little Rose, examined her meticulously, and carefully explained that she needed to be immediately admitted to the ward.

He gently asked me what my understanding was of how Rose’s liver disease was progressing. I told him that a few weeks ago, it had seemed like quite a positive picture, but that I thought that had changed. He quietly said to me: Yes, I think so too.

His gentle and wise manner put me at ease very quickly. I felt that Rose was entering a new stage, but in safe hands.

Amongst other measures, he ordered that a nasogastric tube be placed in Rose’s stomach, so that we can feed her more easily. The tube is something we had anticipated with Rose’s difficult weight gain, but I had initially felt (irrationally) resistant to the idea of it. My accepting the tube perhaps meant accepting the notion that Rose truly is a sick child. Well, when the tube finally went in last week, as traumatic as it was, it was aso a relief. At last we can feed Rose the formula that she hates tasting, and also we can shoot the many and increasing medications she needs straight down, bypassing her tastebuds! Rose used to spend hours a day gagging on the various drugs I’d try to sneak into her mouth. Not any more. Nasogastric tubes are actually a fantastic tool.

During this hospital admission, we have spent long sessions talking with the specialist about liver disease, transplants, the frightening things and the possibilities for Rose to be healthy post transplant one day. It has been an enormously emotional couple of weeks, adjusting to this new view of Rose’s life. But far from feeling hopeless about it, I am at times almost elated. At last, we know that her initial surgery has not succeeded. But transplant seems like an exciting new goal. Scary, yes, but exciting too.