Saturday, August 29, 2009

Maybe, Maybe Not

Slightly better day. At one point Jane was down to about 70% oxygen, although as of 9 pm she was up to 80% again. Sounds like she was on 100% briefly, but tonight's Awesome Nurse got her back down again by flipping her on her belly. She does like sleeping on her stomach, but as my sister pointed out yesterday almost all of us on my side of the family are side/stomach sleepers, so she comes by it honestly.

No real changes are being made in Jane's treatment, and there's a chance that she hasn't got pneumonia at all -- that her white blood cell count is up only because of the steroids she's been on.

You'd think they'd know whether someone has pneumonia or not. I guess I always assumed that with a significant disease doctors would have a definitive way of determining whether you've got it or not. But no. And, of course, nothing is easy with preemies. A little googling (what did we do before Google? I can hardly recall those dark ages. Did we all have well-thumbed reference libraries? Or did we sit around idly wondering about things?) um, what? Oh, right. Dr. Google tells me that preemies are particularly hard to diagnose because (1) the symptoms are the same as so many other things preemies frequently have, (2) there are several kinds of pneumonia, and (3) it's easy to get false positives (from common microcritters in the nose and throat) and false negatives (because the infection is to deep to swab).

Awesome Nurse thinks Jane simply looks and acts too much like a healthy kid to have an infection. Haven't we heard this song before? Anyway, barring any major changes tomorrow, Jane is going to be left alone treatment-wise until Monday when the team will reconvene to brainstorm. She also said that when they have a really hard time figuring out what's going on, they'll bring in the infectious disease people. Well. Huh. That would be something, wouldn't it?


Karen said...

Tia...It sounds like Jane is quite the fighter and we should believe Awesome Nurse Jane that she looks and acts too much like a healthy kid to have an infection. As for your question as to what we did before my case, the answer is probably not drive my pediatrician as crazy as I do now by consulting Dr. Google before I see him. When Andrew was 6 months old or so, he had a cough for months and I got really scared that he might have cystic fibrosis. Dr. Google told me that kids with CF have saltier sweat than normal so I spent a few days licking Andrew to see how salty his sweat was before going to see the doctor. However, I wasn't sure how salty sweat was supposed to be so at one point, I tasted my own sweat but still wasn't sure if Andrew's was saltier or not. Steve thought I had really lost my mind at this have to understand, Andrew was not a good sleeper as a baby so I wasn't sleeping very well and only now do I know how much I need sleep to think things through. When I finally saw the pediatrician and asked him my worst fear about CF, he sighed and told me that they screen babies at birth for CF and Andrew definitely did not have it. He just had a cough. See...Dr. Google forgot to tell me about the screening or I forgot to google that part :-) Anyway, I still use Dr. Google all the time and I'm sure my doctors love me for it!!

tia said...

It's so true! I'd say 99 times out of 100 Dr. Google is either useless or a fear-mongering sadist. But then you get that one time with solid info. And that one time is what keeps bringing me back.

I can't believe you licked your kid to try to diagnose CF. Now *that* is some serious sleep deprivation. I hope Michael's taking it easier on you than his brother did!