It's been a long couple of days. I called for Hannah's test results last Thursday. The nurse had the results but wouldn't release them to me. She said the doctor would have to call me back but would be in surgery all day. Later, I got a call from the nurse telling me that she'd need a weight on Hannah on Monday and if she was down Hannah would have to be admitted to the hospital.
We were very disappointed, but we knew admission was coming. The child had lost several ounces that week and we just don't know what to do.
We sent the boys to their grandparents for several days and we packed a hospital bag. Monday we weighed Hannah and she had lost 3 ounces over the weekend. We called the GI office and waited. They never called us back....We thought we were getting admitted and we didn't even get a phone call!
Tuesday morning the actual doctor called. She said that, from everything they've fun, Hannah's exocrine pancreas isn't working. The most common reason for that is cystic fibrosis and it has NOT been ruled out yet. She wants to send away for genetic testing.
She also said that she wants to admit Hannah but wouldn't know what to do with her if she did...she has to figure out the cause of her pancreatic insufficiency before she can give enzymes.
Since then we've had another ultrasound, the genetic testing, lots of labs, and a urine culture. We continue to wait for results....
We're so disappointed that Cystic Fibrosis is still the main suspicion. We were so hoping that we could move on to something else. Like the doctor said, though, something is making her pancreas not work and CF is the most common reason for pancreas problems.
In the meantime, baby girl is getting in to everything, eating all she wants, and stealing our hearts. We just wait.