Showing posts from June, 2004
View out of Rose's window, just before sunset

A ward girl again.

Look at the natural light flooding the room. A small thing, perhaps, but one of the many aspects of our familiar environment that we're appreciating in its contrast to the ICU environment.

Transferred to the ward today.

Rose has miles yet to travel in her recovery, but this move from the intensive care setting, at Day 50 post-transplant, means the world to us.
A magnificent step today - off the ventilator!

Rose has picked up suddenly and significantly since the decision was made to recommence feeding her parenterally (direct into the bloodstream via a drip).

This kind of feeding carries risks. While it undoubtedly enabled her to gain her pre-transplant fat, and it is a useful way of nourishing the extremely ill, total parenteral nutrition (
TPN) can place a strain on the liver. Rose's new liver can hardly afford any extra strain.

But on the other hand, she's had so much trouble keeping down any food, that she has become quite under-nourished again. She needed energy in order to fight and recover, and start breathing on her own again. TPN is providing that energy.

They'll be keeping a close eye on how her liver handles the TPN.
Moved again to the room with the natural light. It makes an enormous difference to the atmosphere in the room.

Rose seems to be biding her time. She seems more relaxed.


Some lighter stuff. . .

”I'm also reading some very entertaining children's fiction. Hannah dragged home about 4 kilos of books from her library visit yesterday.

The one I read to her tonight is a 25 year old story called The Wild Washerwomen! 7 wild washerwomen go on a violent but funny rampage lasting weeks. They had had it with their exploitative boss and tipped a pile of dirty washing on him before wreaking havoc on their own village and the surrounding ones, travelling around on a carriage drawn by a mad goat!

Challenging stuff for Hannah at bedtime - she needed to knit a few rows of scarf to settle down after hearing of the slightly violent triumph of those washerwomen!”
Back in the room with Rose, Hannah gets back to her many ways of amusing herself.
Rose has been struggling with the task of breathing. Her oxygen saturation dropped this afternoon. Hannah and I were asked to leave the room while Rose was re-intubated.

We waited in one of the fluorescent-lit waiting rooms, and I tried to talk calmly with Hannah while my anxiety level rose.

Hannah kept me on an even keel with her matter-of-fact chatter. To pass the time we took photo portraits of each other and of her bear.
One of Rose's favourite ward nurses visits to give her a pep talk: you have to fight, Rosie!
Lewis cuddles Rose on his 11th birthday

This is again my Australian friend living in the UK whose baby girl is just 10 days older than Rose.

“We're going OK despite the setbacks. Rose's dodgy liver function numbers (bilirubin, gamma GT, ALP) are slowly starting to level off and sometimes fall, which is what they're supposed to do. Last week, they were climbing and her jaundice was deepening - always a worry!

She had the ventilator removed a few days ago, but is still receiving some breathing assistance via CPAP. With any luck she'll be off that today, and might even go up to the ward.

She's properly awake now that the morphine's clearing out of her system, and appropriately cranky when the nurses have the audacity to suction her airways! Shane reckons she says "Help!" After a month of not hearing her, her little voice sounds so sweet!

We're staying positive.”
Shane and Rose have an afternoon nap
The ward nurses took Shane and me out for lunch, to the pub across the road. What a treat to spend time with these fine people who have become our family, not to mention the rare opportunity to feel some fresh air and winter sunshine.

The love they have for Rose is palpable. Many of the ward staff have been visiting her, at all hours. Rose sometimes has dozens of visitors across a 24 hour period.

We're pining for ward life almost as though the ward is "home". You can see how an extended stay in ICU has our world skewed a little: the goal is not yet even to get Rose home - just off the ventilator and back to the ward!

"Rose has had us worried a number of times since transplant. She's been back to theatre four times, has fought off all manner of bugs, been extubated once and re-intubated within hours, had six perforations in the small bowel sewn up, blah blah blah.

But then very scary news this week: a liver biopsy showed that her new liver had suffered some early rejection of the bad kind. The kind that attacks the blood supply to the bile ducts. There's evidence that she has had some generalized damage to the bile ducts! There could be problems with bile properly flowing out of the liver.

When we heard this, I flipped out with anxiety, because of course her original liver condition, biliary atresia, was all about damaged bile ducts trapping bile in the liver, causing cirrhosis and eventual liver failure.

However, this new damage has occurred because of rejection, but the rejection has somehow burned itself out and is no longer active. Rose doesn't ha…

". . .the little rascal is still on a ventilator in ICU 4 weeks after transplant! But that's another story. . . she's having a rocky ride - her new liver had some early rejection that has left the bile ducts with some damage. She's been back to theatre 4 times since transplant with all kinds of problems, including 6 little perforations in her small bowel. We're waiting to see how things settle, but she's continuing to fight. She's a great little kid!"

These are people we shared a room with at the hospital late last year. Their daughter has a very rare degenerative neurological disorder. They have emailed us, and I'm replying here.

"We've had Rose down in ICU for nearly a month. We are very lucky that she received a liver transplant on 6 May. She's been battling away on a ventilator since then, returning to theatre 4 times to fix various complications. We're hoping she can start to progress soon."