Work-up Week is Over


Long week, but very satisfying in some ways because we now know everything about Zoe from head to toe. No more worrying about what we don’t know, now we only worry about what we do.

She’s been poked, prodded, scanned, zapped, scream-extracted, sound-tested, irradiated (twice!) and suffered no end of cheek pinches. The only thing that bothers her is her blood pressure cuff though, she’s a fantastic baby, calm through most everything.

In terms of test results, Zoe is overall in great condition. Sometimes it just seems amazing that she needs a new immune system, the rest of her is in pretty fine shape.

The three main test results we were still waiting for are back, her brain and sinus CT and her kidney function.

The brain scan was completely clear. No swelling, no “gaps”, no shrinkage, and it’s centered (which is something that had never occurred to me to wonder about). This is great, great news. I was deathly afraid that her prolonged exposure to steroids was having an effect, or the intrathecal medication (into her spinal fluid) may have had an effect on the brain, but it has not so far.

The sinus scan came back with a little cloudiness on her right cavity, which to be honest was no surprise. My side of the family has a grand tradition of sinus problems during pollen season, and Zoe has been sneezing and sniffling in recent weeks at the same time the rest of us were. They prescribed a bit of antibiotic which should clear it right up.

The kidney function test is called a GFR, and involved putting a radioactive but non-harmful chemical into her blood stream. Her blood is then drawn at 1 and 3 hour intervals (on the dot! they’re very intense about this). This allows us to know how much of the chemical is being processed through the kidneys and therefore how efficiently they’re functioning.

Zoe’s first GFR came back at 49, which is about half of what they wanted to see. There is a strong feeling from Dr. P that that number may not be quite accurate, but none of us will be surprised if it’s close. She has been on Cyclosporine for a long time now, and a higher dose than is sometimes necessary we’re told. That can reduce kidney function temporarily. She also has had high blood pressure for quite some time we think which is directly related to kidney function. We have fits because the only test she really fights is the blood pressure, she has chubby little arms and doesn’t like the squeezing, and between the struggling and the crying it’s hard to know if it’s ever right. From time to time we get one when she’s asleep, and it’s usually just fine then, if slightly elevated.

Regardless, the test came back low so we’re doing another one on Monday. We’ll know for sure then. If it truly is low, it won’t change our trajectory but it will mean possible adjustments to meds in some situations to ensure we’re not doing permanent kidney damage. From what I understand, what we’re seeing is likely temporary as a result of her meds and her kidneys should should make a nearly full recovery in time.

The rest of her tests for the week showed her to be a healthy little baby, with the exception of her immune system (HLH) and the kidney issue. Again, shew.

Next week we have the GFR again on Monday, a bone marrow aspiration and lumbar puncture on Tuesday. After that we have about a week off, then we begin her conditioning and countdown to the transplant.


2 thoughts on “Work-up Week is Over

  1. Zoe is such a happy and beautiful little girl!! It is great to hear all the tests have wonderful results. Zoe is such a little trooper. All the tests and she is still laughing and smiling!!

    Love to you all,


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