Monday, March 10, 2014

There Was a Little Girl and She Had a Little Liver

Once upon a time my daughter fainted in church. After a full cardiology workup she was diagnosed with "Overdose of the Holy Ghost." Can I get an "Amen"?

The resulting blood work from that episode showed something unusual: my baby had high bilirubin. Except that my baby was 11 and her bilirubin hadn't been a cause for concern since she was a couple of weeks old. Sure, she's always been a little on the yellow side, and sure we make sure she never wears yellow because it makes her look like a squash or a banana, but she's got that island blood in her, right? Well, it turns out that she's not actually supposed to be quite so yellow...and her eyes definitely aren't supposed to be yellow.

Follow-up blood work showed the bilirubin stayed consistently high and an abdominal ultrasound showed that her liver was abnormal. A nuclear scan showed that her gall bladder doesn't play nicely with others, either, but her pedi GI actually thinks that might be unrelated to her liver difficulties. My daughter - such the overachiever. One faulty abdominal organ just isn't enough for her.

Even more blood work later (she's to the point now where she just sticks out her arm politely, gives up ridiculous amounts of blood, says "thank you" and walks out gracefully - phlebotomists love her) - oh, and urine (yay - no dignity left for my now 12 year-old!), and it turns out that copper may be causing her trouble.

So, a week ago we found ourselves where we didn't want to be at all: Texas Children's Hospital for a liver biopsy. And now we wait. I *really* hate waiting. I think that the doctor is pretty sure about what she has (not that he'll tell us) and I think that I'm pretty sure, too (not that I'll commit it to electronic paper). If I'm right, it's 100% treatable and 100% fatal if not treated for the rest of her life. That is super, super scary to write.

For reasons about which I am not entirely clear, her liver had to travel to MN, so we won't know for a little while. She is handling things awesomely. She is spending all of her time working on debate (she wants to qualify for Regionals so badly!) and looking forward to dancing at Ballet Center of Houston this summer. She even laughed when her brother asked us what time we were going to be home from her autopsy last week (Nicholas - oh my word! He's another post. It's a testament to how much time and energy Therese has been taking that we have not dealt with his diagnosis of Tourettes AT ALL).

The upshot: if you have a moment to spare, would you say a quick prayer for my Therese? We have dealt with this in private and in silence for almost a year now, but I am at the point where I feel like some prayers would really help us.

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