EXCERPT OF EMAIL TO ROSE’S LIVER SPECIALIST

Written because of my growing anxiety over Rose’s ongoing distressed state.

“I hope you don't mind my putting some new concerns in an email . . . Rose continues to be very unsettled, crying for many hours each day (and night). Last night we noticed that her feet looked puffy. While they're not huge, they do have pitting oedema.

When we noticed it, Shane rang the Royal Children's to find out whether it was an urgent problem. He spoke with one of the registrars . . . who said that it would probably be OK to leave till today. Obviously we don't want to rush in if it's of no great concern, but we wanted to run it by you just in case. . . . Finally, while we're waiting for the Omeprazole to "kick in", is there anything else we could be doing to relieve the distress of her reflux. She's a very miserable little girl, and we feel pretty helpless about what to do for her."

Rose’s specialist is about to fly to a biliary atresia conference in Birmingham, and will be away for a few weeks.

She nevertheless phoned me to discuss my email. We talked about the fact that the hernias and puffy feet indicate that Rose is developing ascites, and that we’d look at controlling it with some medication.

She has placed Rose in the experienced hands of the other liver specialist at the hospital, in case there are any concerns while she’s overseas.

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