We're supposed to repeat the sleep study tonight but Patricia tells me they have postponed it. Huh? Obviously my preaching about being proactive isn't sinking in. Regardless, we get some wonderful news today but like all good news you get it's tempered by the fact that most of the time you don't get any definitive answers.
Eli's copper test came back this morning and it came in at a 34. I don't know the relative scale but "normal" is 36. Eli is slightly low but not low enough to be a significant marker for Menke's. Patricia said they also brought in a Menke's specialist to look at Eli. After checking him out, the specialist doesn't think Eli has Menke's disease. He's 99% sure. We discuss it with some of the pediatricians on the floor and we come to the conclusion that Eli was potentially under nourished when they were drawing all the blood for his lab work. Copper levels and Ceruloplasmin levels are a function of nutrition in the body. Eli wasn't eating well to begin with which is what started this whole experience. On top of that they didn't feed Eli for the first 48 hours we were in the NICU in case he was having problems metabolizing the milk and formula. We have a plausible explanation for the lower copper and ceruloplasmin levels. Now that we think we know what's happening we ask if we can have the ceruloplasmin level retested. It's done at a lab right here in the hospital so the results come back in a few days instead of weeks later. While this is by no means a definitive negative result on a Menke's test we could at least feel a little better about where we're at if the result comes back normal.
We can forgive the sleep study delay at this point but we're still pushing to make sure we're actively looking for a cause of Eli's symptoms.
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