Well, I guess it was a few weeks ago that Emily's belly started looking distended. She gained a few pounds, jumped from 42 to 44 or 45 pounds. She then started having trouble with bowel movements, and her vomiting during the night came back. I thought she was surely having motility issues again, as Emily has a diagnosis of severe gastroparesis. We had discussed motility issues with a specialist a few months ago, and he gave us a list of options to try...next step was to try Erythromycin to increase her motility (although the doctor really wanted to go ahead and fix her pyloris, but we want to avoid surgery if at all possible). So I talked to the pharmacist to see what he thought, I discussed it with my husband, and we decided we'd give it a go. Good news is that Emily started going to the bathroom easier, and she stopped puking....I hoped the problem was solved.
The only thing is that Emily continued to swell. Her belly got bigger, and in a few days time, she jumped to 51 pounds!!! Her belly was swollen, her arms and legs were swollen, and even her face was puffy. Something was up, so I have spent the week trying to track down the right doctor for the job....Today Emily had x-rays and labs. X-rays showed her liver is huge. Not knowing why, we went back to the doctor for ultrasound...which showed a normal liver (no masses, etc), just a really large liver.
So again, I heard the words I have grown too accustomed to hearing over the years where Emily is concerned. "I'm sorry, but this is nothing I've ever seen before. This is a mystery."
Solution: Emily will be seeing a liver specialist next week. In the meantime, I am to closely monitor her for signs of worsening of her condition. Change of respiratory status, increased dyspnea, a wet cough, vomiting, change of mental status or lethargy, and complaints of abdominal pain would all be signs that warrant a trip to the hospital. And in the meantime, Emily is forbidden to participate in her sports. She is not a happy camper!!!
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