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Mixed Bag

posted Feb 1, 2013, 6:25 AM by Becca K.

Sort of a mixed bag of news I guess is what we got yesterday.

To recap:

Portal vein has been blocked for some time. Collateral vessels are doing the work for it. The risk of bleeding is real. She does not appear to have hypertension, but her spleen is enlarged. How enlarged? “She probably shouldn’t take a punch there,” said the doctor.

They were impressed that she is swimming competitively and encouraged her to keep it up. On the growth carts, she is 95% for height and 80% of weight!!! Remember a time when she “failed to thrive” and fell off the charts? She caught up in a big way.

The labs look good. So good in fact that they are considering weaning her off of immune suppression! She takes such a low, hardly detectable dose right now, that if she didn’t have the secondary issue of the portal vein going on, it would be a no brainer. But the portal vein what it is, we’re going to hold off on the wean, for now.

Her lymph nodes are nice and small, indicating that PTLD is at bay.

The ultrasound showed that the portal vein is still blocked. Transplant team mentioned the two types of shunt surgeries that we’d discussed in the past. Neither of which has particularly good odds in living donor situations. However, without the surgeon present, all we could do is surmise what he would want to do. And last time, he didn’t think the risk was worth it, since she hasn’t presented any issues (bleeding, visible varices, high blood pressure, etc.). What are varices you ask? Think varicose vein, on the inside. http://en.wikipedia.org/wiki/Esophageal_varices

So what’s the plan?

I’m glad you, the imaginary person in my head, asked.

This is all subject to change, once the surgeon reviews the images. But for now we understand that we’ll perform another scope, most likely sometime this summer to look for signs of any varices mentioned above. And then we’ll go from there.

And since the new hospital is near American Girl, guess where she thinks she gets to go?
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