The Hotel Emanuel

That would be the "hotel" Legacy Emanuel Children's Hospital in Portland. As you may have noticed, things have been pretty crazy with Jordan over the last few weeks. Things finally came to a head today, so with great relief, we checked in for a few days. She's really got the docs stumped! Lots of them. Pediatricians, nephrologists, geneticists, neurologists, endocrinologists, residents, interns, you name it, they can't figure her out. Her lab results are completely wacko and inconsistent with ANYTHING known to man. And, we don't know if it's because of her undiagnosed condition, or because of all the meds she's been on, or perhaps a bit of both. The "good" unofficial news is that the ultrasound of her kidneys, bladder, and liver were totally normal: the right size & shape, no tumors, no absesses, no malformations. Those were all on the table. More tests tomorrow to check her kidney function, and of course, more blood, pee, and poop.

For tonight she's on a sodium drip to try to get her sodium levels up. Right now she's in danger of having seizures because her levels are so low -- and of course we don't know why (although some theories exist). I am FREAKED out at the idea of more seizures!! And of course, more salt means more hypertension, so they're going to check things in the morning and see if they can find a different drug to control the blood pressure issues.

The good news is that the bladder infection is gone (despite crazy-high white blood cell counts in her urine), she's not febrile, the ACTH is DONE, the Augmenten is done, and the results of the ultrasound were (unofficially) good. The really good news is that she's hardly screaming at all!! It's like night and day -- she's practically a new kid. I like to think it's because of the steroid wean, but it's possible that it's because she's too sick to cry.

And the "good" news for me is that Devon stayed at the hospital and sent me home tonight to SLEEP. Of course, it's only good if I CAN sleep, instead of cleaning the house, going through mail, doing laundry, getting the dishwasher loaded and started, or even just clearing my mind of worry. The good news for Devon is that before he decided I had to go home tonight (my first night away, ever), the nurse came in and said that she had instructions for extra duty through the night -- so that I could sleep through. She'll be doing the feedings and diaper changes tonight instead of Devon, so he will have a better chance of sleeping through. Go figure he's weasel in on that luxury, it was for me that the service was ordered (by Jordan's pediatrician). It's a nurse we've had there before, but that was in April or May, so I can't remember if we liked her or not.

And as far as hospital stays goes, this one isn't turning out to be too bad. Because of the infection we're in "protective custody" -- so we get the whole room to ourselves. Lots of space! And a bed, 2 cots, and a built in sleeping nook. We could practically have a slumber party in there. And, to top it off, since we finally maxed out our insurance the last time we were in, it's all TOTALLY FREE now, not even a copay. I think we should get as many hospital stays as possible, really.

Okay, now I must go to bed to take advantage of such a great opportunity. Vitamin A(mbien) -- come to mama!

More later. I wish I had the camera when there were 3 docs listening to Jordan's lungs at the same time -- it took up practically her whole tummy with all of those stethoscopes.