Back in February, we had another stay in baby jail. While we were there, one of the residents got a wild hair up her hind quarters and read Little M's entire history. She noted that he had elevated liver enzymes back in 2010. WE had seen a GI doc then and it was decided he had a premature liver and more blood work was ordered and a referral to Neurology was made. That's when the DMD was diagnosed. I didn't think anything else of it. Well this resident demanded we have labs drawn to follow up. I should have said no, but what if something really was wrong. Best case, it's a tiny stick for blood and everything comes back fine. Worst case, it's a tiny stick (at 4:00 in the morning!!!) and it comes back not fine. It came back elevated higher than before. Damn it!
So today we had a follow up with the GI doctor we saw before. Shockingly, she remembered us. Or at least his history anyway. She looked over the most recent labs and history. She kept talking about how elevated enzymes are sometime just a side effect of the DMD. She wasn't concerned about the size of his liver at all. It sounded like we were going to get out of an appointment without something new wrong! She even said he doesn't appear to have any liver disease! Horray!!!
Then the other shoe dropped. Because of his elevated enzymes, recurrant respiratory illnesses and elevated CK level, she's concerned he has Cystic Fibrosis. It's been know to happen in kids with DMD. So Little M has to have a sweat chloride test done next week some time.
I'm terrified.
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