Back in the Hospital…

Well, we’ve found ourselves back at UNC Children’s Hospital again.  Thankfully this time it’s not under quite so dire circumstances as last year.

Here’s the long story…

Two weeks ago (actually on Friday, September 17th) Adela woke up with a fever and upset stomach.  We figured it was just a stomach bug and it would be gone in a few days.  She seems to get sick with this every month or two and it usually goes away in less than a week.  This time though, it stuck around.  At the end of the week, we went to see her pediatrician and agreed to just see how she did over the weekend.  On Monday when we went back, she ran a standard blood test and saw that her white blood cells were high…higher than she’d ever seen in a patient.  (4 to 14 is the normal range…she was at 37).  She talked to Adela’s other pediatrician (because why just have one pediatrician when you can have two) and they agreed — we really needed to admit her to the hospital.    So, Monday afternoon we packed up, left home, and checked in to UNC.

Since then, she’s gone through a week of testing to try to narrow down what’s causing her to be sick — not just now but also previously.  We had always maintained (and the doctors agree) that it seemed too much of a coincidence that Adela seemed to catch the same stomach bug every month or two.  There is some deeper cause, but with Adela being Adela, she’s not making it easy to find.  Right now, the top two contenders are either an infection of some kind or inflamed bowel disease.  However, none of the cultures they’ve taken have shown any growth for common infections and an initial test that would indicate inflamed bowel disease came back negative.  However, there are more tests to run (aren’t there always), so we’ll be around for a little while longer.

Yesterday she was feeling a little better.  She slept for a good part of the day and really perked up at dinner time.  Right before dinner, the IV was removed because it was going bad.  We carried her and her food down to the cafeteria and ate there just to get her out of the room.  Later that night the nurses tried for 30 minutes to get another IV in, however couldn’t (left arm was swollen from the IV going bad, right arm is torn up from one blood draw after another, and both her legs and feet were swollen because of her low albumin level).  So, we decided to hold off on putting in an IV and see how her sodium levels were in the morning.

Today she seemed a little perkier in the morning and actually sat up in her little blue chair for a while.  We visited the cafeteria for lunch and she had some ham.  However, after lunch, her fever spiked again and she napped right through to dinnertime.  No dinner tonight, but maybe tomorrow.  At least she gets her Elecare at night to give her some nutrition.

So, where are we with getting this figured out and getting home?  That’s the million-dollar question.  The doctors have ruled out some of the more common and straightforward causes of her being sick are are now moving on to the more unlikely scenarios (like mitochondrial DNA defects).  We have expressed to the doctors that our own criteria for leaving the hospital are either for Adela to be well (or at least really close to it) or to know what’s making her sick and how to treat it.  We haven’t met either of those criteria yet (though I don’t believe for lack of trying).

Adela is understandably upset a good amount of the time and quite paranoid of anyone other than family that comes in.  I can’t blame her…after being poked and prodded at all hours by dozens of people, I’d be nervous too.   I think the worst are the blood draws — at 5:00 in the morning.  I understand that they do them that early so when doctors come on rounds they can have some of the results, but try explaining that to a sleeping toddler.

Anyway, we’re remaining hopeful that Adela will keep feeling better and we’ll be home in a few days.  There are a lot of variables though so we’re trying to stay realistic.  We’ll keep everyone updated through the blog as we go through this.  Thanks for all your support, thoughts, and prayers — they mean a lot.