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Uncertainty

Ashley's body is trying to tell us that something is just not right. However, we can't figure out what it is trying to say. Ashley woke up yesterday morning complaining of belly pain; this seems to be a weekly complaint. We followed normal procedures by taking her temp-normal, telling her to go to the bathroom-everything normal there too and giving her a bland breakfast of dry toast and water. Since she didn't have a fever, she went to school.

Fast forward a few hours. I get a call at work, Ashley's in the clinic again complaining of belly pain. She says she feels like she needs to throw up but nothing happens. I leave from work to pick her up and take her home. At home she seems fine, but her face looks gaunt; she looks tired. I called her pediatrician and her liver doc. Both docs agree that we need to take her to the hospital to have labs drawn. So yesterday, Ashley and I spent two hours at the hospital waiting to have labs drawn; a procedure that only takes a couple of minutes. Now we wait...we wait to see what her lab results tell us.

Ashley had a full set of labs which include CBC's, electrolytes, full liver panel, etc. Her liver doc wants to rule out anything liver related before proceeding to the next step. The next step would be stool and urine sample. This could be as simple as reflux or as complicated as cholangitis. Cholangitis is an infection in the bile ducts in the liver. It is very hard to diagnosis because each child with liver disease presents symptoms differently, there is no set guideline in diagnosing this complication of liver disease. If it's cholangitis, Ashley's labs will be elevated and she will be admitted to the hospital for IV antibiotic treatment. Of course, Ashley still has that cough. My prayer is that the cough and the tummy pain are related to reflux.

The uncertainty of what Ashley's liver disease is doing to her body is enough to give this blonde haired mom some grey hairs. Biliary atresia is an enemy we can't see but we know it's there with every attack on her body. It's frustrating as a parent not to be able to fix this problem. It's frustrating not to be able get beyond the disease as much as we try too.

Ashley went to school today and made it the entire day without a complaint. Today she will go to her Jazz and Lyrical class. Dance is the only thing that seems to make Ashley smile these days. She loves the music, she loves the way her feet feel when she dances. Today Ashley is a normal 9 year old. Tomorrow we will deal with later for now I want to watch my daughter dance!

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