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.

But 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 recover from surgery. She's one week on, and started smiling again about 4 days after surgery. The first couple of days were absolutely - harrowing – as you put it. She was writhing and screaming in agony on the first night, and they didn't crank up her morphine till the Pain Management Team visited her the next morning. When I say she was screaming, you could barely hear her because of her voice being a bit lost after the general anaesthetic! Total nightmare - I cried buckets and buckets!

Cried buckets again when a nurse finally told me I should probably pick her up for a cuddle - I'd been so afraid to do it in case I broke her! Since then, I've barely put her down.

Things are very different now - there's been progress each day. Just a couple of days ago she was only allowed 5ml of expressed breast milk per 3 hours! It was more teasing than feeding! Yesterday she graduated to the breast, and was also allowed to be totally removed from all the drips and everything she was attached to. It's great - and she's smiling heaps.

We're just watching the colour of her . . . number twos. . . now. They had been almost white before this surgery, and now they're starting to get some green in them. I'm so worried each time the poo isn't quite as green as I'd like - but they tell us the colour may fluctuate for a while.

Her skin, and whites of eyes, are still very jaundiced.

The well-meaning cleaner who came around this morning informed me of this, and suggested I just pop Rose in the sun! If only it were so easy
!"

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