Well, Ellie doesn't have an ear infection however, we got medicine just in case. She also got some poop medicine (it's been a few too many days). Just thought I'd share something about her poop ;)
We went to Sacred Heart Hospital in Pensacola today and had the test ran. Ellie has an acute cortisol deficiency. When she was in the NICU they tested her and she was within normal limits, but now she is below normal limits (I don't know what the measurement is but the cutoff is 18 and she's at 16.9). The endo said she has hypo-pit (hypopituitarism), but I just looked it up and it said if the body was deficient in one or more hormones produced by the pituitary gland; with her DI that would mean that she already had hypo-pit. Semantics I guess.
Brief med history about cortisol: an important and helpful part of the body’s response to stress, it’s important that the body’s relaxation response to be activated so the body’s functions can return to normal following a stressful event. Other positive effects: A quick burst of energy for survival reasons. Heightened memory functions. A burst of increased immunity. Lower sensitivity to pain. Helps maintain homeostasis in the body. http://stress.about.com/od/stresshealth/a/cortisol.htm
Her body is still producing cortisol but it may not be enough to help her during high stress situations, which include but are not limited to fevers over 102, medical procedures that last over 15 minutes if they cause her pain, or any surgeries or hospitalizations. We only have to give her the medicine when she needs it, and we'll have a pill for the fevers and shots for the other stuff. There's actually a letter with instructions from the doctor telling us when we should use it. But just like her DI medicine it's "as needed" which just adds more responsibility and stress to Dusty and I to make sure she gets it when she needs it and only then. What happens if she doesn't get it when she needs it? Well she could have an adrenal crisis, and there's a laundry list of problems that could happen but in short, she could go into shock or a coma. Highly unlikely at this point because she is still producing some, so maybe she'd show signs of being faint, but still something to be aware of.
She's not unfamiliar with the medicine though. When she was in the PICU and intubated they gave her some to help her relax and heal faster. It helped, and her endo even made reference to it in the PICU and today.
What does it all mean? It means this is what we were told to expect... the unexpected. It is a little disheartening to hear that there's something else that she (and Dusty and I) have to deal with, but that's what SOD is. It's a bucket of possible problems and only time will tell what ones we have to deal with. I'm not the doctor and I'm just getting to scratch the surface of all the hormones the pituitary gland makes and if the hormone is produced in the anterior or posterior (front and back of the gland, I did learn something in A&P), but it looks like we're getting all of the pituitary hormones that she needs right now replaced. Once she hits puberty we'll have to see how those work. so it goes back to... the unexpected.
Man Poor Ellie! She just can't seem to win! I just learned about Cortisol not too long ago in one of my classes. She is below but not by too much! Just praying that her pituitary gland goes oh sorry was just slacking that day and gets back on track! But knowing Ellie this wouldn't even stop her from continuing growing and developing! Might be way harder on you and Dusty but I don't think it will hold her back at all! You still have time before that puberty hits and when that happens she will tell you if something isn't right! Keep praying and I will too, something has to give!
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