this biliary atresia experience

One of the compensations of being hospitalized is the view towards the east from the 8th floor. This was taken at dawn, looking across Parkville. EXCERPT FROM EMAIL TO FRIEND IN THE UK This is again my Australian friend living in the UK whose baby girl is just 10 days older than Rose. "Unfortunately we have Rose in hospital again. She's been in a week, and this admission came on top of a 12 day one only 6 days before that! Poor little girl - she's heading for a transplant, maybe early next year, but we're actually in good spirits, and getting very used to the idea."

I spent a great day with Lewis and Hannah at the Royal Melbourne Show, while Shane stayed with Rosie. We stayed till after dark, and watched the fireworks. We were so sleepy afterwards that Shane told me to sleep at home, and he'd do a second night in hospital. EXCERPT FROM EMAIL TO FRIENDS These are friends from the kids’ school. Their child has had surgery and treatment for a life-threatening illness, at the Royal Children’s Hospital “We may be bringing our beautiful bub home (again!) this week. She's not exactly "fixed", but it looks like Rose will need frequent pit-stops in hospital, to deal with all the stuff her dodgy liver is throwing at her. Shane and I are actually settling into the idea of Rose having multiple admissions leading up to transplant, and generally feeling OK about it all, because of our faith in her splendid health team. They're just ace, and the doctors seem to be a pack of geniuses, with personality to boot. We even met the transplant surg

EXCERPT FROM EMAIL TO FRIENDS “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

EXCERPT FROM EMAIL TO FRIENDS IN TASMANIA Emails and phone messages are building up, everyone wanting to know what's going on with Rose. This is my rushed response, dashed off quickly as I got in the door tonight following six solid days and nights in hospital. I want to stay with Rose, but Shane has sent me home to recharge - my head is addled from sleep deprivation. “Am writing this super-brief email in a rush. I've been in Royal Children's Hospital again with Rose. . . since last Thursday. Shane has sent me home for the night, but she's in for the next little while - no discharge date as yet. She has had portal vein thrombosis , ascites , varices - and today we hear she's picked up pneumonia to boot! Bloody hell! More news as soon as I can. Gotta go and get the kids and me into bed!”

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 t

EXCERPT FROM GROUP EMAIL TO FRIENDS IN MY LITTLE BOOK CLUB We have a book club meeting arranged for the end of this week, but Rose's distress is increasing. I want to hold her constantly to ease her anxiety, even if there's not much I can do about her pain or discomfort. “I have my fingers tightly crossed that I can come - Rose is a very distressed baby with bloody gastro-oesophageal reflux these past couple of weeks, and I just can't go out when she's suffering. I really hope her medication starts to work by Friday, but if she's like she is now (crying and squirming almost constantly!) i just won't be able to get out.”