EXCERPT FROM MASS EMAIL TO FRIENDS
"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However, this new damage has occurred because of rejection, but the rejection has somehow burned itself out and is no longer active.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 have a progressive, degenerative disease like she had with the old liver. Some kids apparently recover slowly from the kind of damage she has now. This new liver, even if damaged, is infinitely better than the one they removed.
Bottom line is that while it's pretty devastating to hear that her new liver now has problems, it should get her back up to the ward and eventually home. If she needs another transplant further down the track, then so be it. Let's see how far this liver can take her.
I know I sound kind of resigned, but I have to admit it's been a hard week to get through. Some positives though: she may be taken off the ventilator tomorrow, and if she copes with that, she might be able to return to the ward we know and love.
Will try to keep you posted. I won't send a photo at the moment - Rose is looking very battered and bruised, and has had sad eyes for a month! She's off the morph as of this morning. She did reach up and touch my face tonight, for the first time in weeks. Can't wait for a smile.”
"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 have a progressive, degenerative disease like she had with the old liver. Some kids apparently recover slowly from the kind of damage she has now. This new liver, even if damaged, is infinitely better than the one they removed.
Bottom line is that while it's pretty devastating to hear that her new liver now has problems, it should get her back up to the ward and eventually home. If she needs another transplant further down the track, then so be it. Let's see how far this liver can take her.
I know I sound kind of resigned, but I have to admit it's been a hard week to get through. Some positives though: she may be taken off the ventilator tomorrow, and if she copes with that, she might be able to return to the ward we know and love.
Will try to keep you posted. I won't send a photo at the moment - Rose is looking very battered and bruised, and has had sad eyes for a month! She's off the morph as of this morning. She did reach up and touch my face tonight, for the first time in weeks. Can't wait for a smile.”
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