EXCERPT OF EMAIL TO BRISBANE FRIENDS "Rose is utterly gorgeous, and if she could be cured with cuddles she'd already be better. As you can imagine, she barely gets put down, and she gives us all so much joy. She's not behaving like a sick baby, which is great. And she seems to already be pepping up a bit with 2 days of the new kind of fats on board. Also, she's still as snuggly as ever on the bosom, and to top it all off is guzzling as much expressed breast milk as I can pump out for her. . . I have time to express, now that she's on this formula some of the time."
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EXCERPT FROM MASS EMAIL TO FRIENDS "Last Monday we brought Rose home from her second hospital admission. For her major surgery 4 weeks ago, she was only in hospital for 7 nights, but her second admission lasted 10 nights. Again, Shane and I stayed with her the whole time, but on this occasion the angelic staff on the ward gave us a private room with an ensuite. We were very well looked after! For those of you who haven't been filled in yet: Rose has a liver disease called biliary atresia. I've cut and pasted a bit about it at the end of this email if you want to know what the hell it is - we'd never heard of it before Rose was diagnosed! Rose had corrective surgery called a " Kasai procedure " a month ago. We still don't know whether it worked (it only works in 50% of cases), and actually, we suspect that it hasn't worked. We'll have more definite news on this in a couple of weeks. Most likely is that Rose will one day need a liver transplant. The...
EXCERPT FROM EMAIL TO FRIEND AND COLLEAGUE written from hospital. Rose was commencing a new medication named ursodeoxycholic acid , or "urso" for short. The "urso" is a reference to the scientific name for bears, as the email explains. "Rose's poo is still pale, but in a greenish hue. However, she's now on bear bile, to assist with the drainage of her own bile and to help her digest fats! (Synthesized bear bile these days, but they used to get the bile from real bears! Don't ask me how. GRRRR!)"
EXCERPT FROM EMAIL TO FRIEND IN THE UK Here I am describing multiple attempts made by various doctors to place another IV line into Rose. Beginning, over a period of several hours, with the ward medical officer, proceeding to the ward registrar, then an ICU registrar, and ultimately a trained anaesthetist. . . "Rose has had another day of torture -10 jabs so far, and to add insult to injury she's also had some hair shaved off. Not in an attractive way either - I might have to shave her head all over I reckon, or get her a little wig!" It was't anybody's fault that it was so difficult to find a viable vein in my tiny girl. But it broke my heart to see her go through it.
EXCERPT FROM EMAIL TO FRIEND IN THE UK Written from the hospital, during Rose's second hospital admission "Shane and Rose and I are . . . at the Royal Children's Hospital, for the second time in 3 weeks! Poor little Rose - she's a real trooper, and recovered from her big open-belly surgery really well. But she started chucking up in the early hours of Friday morning, and we ended up back in here on Friday, to find that she has a bout of cholangitis (an infection of the liver ducts, I think). Poor wee darling, she goes through so much! She was very dehydrated from the spewing, and they had to get a line into her, quick, for some fluids. But because she was so dry, they couldn't get any vein in her hand or foot (after much digging around under her tender skin, her screaming with terror and pain, me crying my eyes out, Shane trying to comfort us both! Horrors!) Eventually they gave up, and had to call a doctor from intensive care who knows how to get lines into the s...
Rose crying at her nappy change. Visible is her new scar, healing well. EXCERPT FROM EMAIL TO FRIEND IN THE UK Written from home, after bringing Rose home from her week-long hospitalization for initial surgery. "We had the most harrowing week in hospital with little Rose. Her first night post-surgery was spent writhing and screaming in agony. I cried buckets, and Shane wasn't much better. Neither of us left the hospital for the entire 7 days and nights. The good thing is that Rose got better each day, initially hooked up to 4 different tubes, gaining a naso-gastric tube, losing it again, then losing one tube each day till she was freed on the last day. She had no food at all for 4 days, then was allowed 5 millilitres of breastmilk every 3 hours for a day. It was torture for us to watch, as it's instinct to want to feed your child, isn't it?! Then 10mls, 15 mls, 20mls - then graduation to "all she can eat" on the breast. Her wound extends right across her litt...
EXCERPT FROM EMAIL TO FRIEND WHOSE SON HAS RENAL PROBLEMS This is written from a computer in the hospital's Family Resource Centre , a hugely useful facility for parents whose children are hospitalized. Rose is in hospital for her surgical admission. When we first knew that Rose would need to come and stay in hospital, I was the one who was going to stay in with her overnight, and Shane was planning to sleep at home with our older kids. B ut on the first night, Shane realized that he didn't want to leave Rose any more than I did! My incredibly flexible parents have stepped in and cared for the older kids, while Shane and I stay at Rose's side, day and night, for the duration of this admission. The ward staff have been very accommodating of our decision, allowing one of us to sleep on an inflatable camp mattress, and the other on the foldout sofabed by Rose's cot. We are grateful that they have allowed us to be so involved. "Rose has amazed us with her ability to re...