RobertsFamilyBlog

Kahlia is a mess - we just keep finding out more things - it's hard to keep track of everything!!! Her Endochronologist from Doernbecher called me this afternoon with some not so great news from the test she took last week at Bay Area Hospital. Back when she had her Cardiac Cath - the Endochronologist had some blood work done. Not surprisingly but disappointingly, she has a growth hormone deficiency. As she stated today, that is nothing that we should be concerned with at this time - we need to get her heart working before dealing with "everything else". But, what that told her is that often times that could be an indication of other problems. Sure enough - her cortisol level was not near what it should be. That is the hormone that reacts to stress in the body. Things could not go well with out that being elevated before her surgery. Sadly, this could and probably will be an ongoing issue - possibly forever. What happens though once she starts taking medication to bring her numbers up, is that her body actually stops creating that hormone herself. So, if she gets a fever, we have to double her dose. If she has diahrrea or vomits - we have to triple the dose. I've gone from absolutely no meds in our home to what seems to be an endless list of medications that I am trying so hard not to forget!!! Her baseline cordisol level was 4.9 when stimulated at the hospital for the test, it went up to 9 - her doctor is not comfortable with levels below 18. She wasn't even close. So - if anyone is interested in a little medical lesson for the day - there you have it!! I am so grateful that at this point, she does have a normal white blood cell count so that she is able to fight off infections - often kids with DiGeorge Syndrome are not able to do that well. Her thrush looks a bit better - but it is still visible. I'm tired, and ready for the comfort of my bed! :-)