Monday, October 6, 2008

Searching for 'The Safe Side'

Little A had a regularly scheduled pulmonary appointment last week. I was almost looking forward to it. It's been over four months since we've had to break out the rescue inhaler to stop an asthma attack. Even two weeks ago, when we had that fast breathing episode with a cold, there was no wheezing present, and radiology declared it wasn't another pneumonia. Plus we made it through a whole vacation without going to the ER, which hasn't happened in over a year. To me, all that was progress. I arrived at the pulmonary clinic expecting to hear "Good job, guys! Those long-acting maintenance asthma meds are doing the trick. Keep dosing her, and see you back in six months."

Which is why I felt pretty smacked upside the head when the pulmonologist talked about how Little A's latest Xrays are oddly grainy in the same place they have been oddly grainy in previous illnesses. He launched into a discussion of right middle lobe syndrome . He also mentioned how he'd like to stick a scope down her lungs to see if there was any goop or other obstruction in there. Depending on what they found, they might culture the goop, biopsy a growth (gulp), or in the case of discovering something she accidentally inhaled into her lungs that got stuck there -- remove the problem.

Not quite the high-five fest I was expecting.

Hearing that a doctor thinks your child's lung is partially collapsed all the time does not make for a happy mommy. And a syndrome is extra difficult to contemplate. I'm not a medical professional, but it seems that the word "syndrome" is medical shorthand for "this grab bag of weirdness impacts the same body part, so let's call call it a single disease, even though it actually has fifty causes and can range from being a little bit annoying to requiring a surgeon to cut out part of your lung."

This would be nerve wracking enough if I had a good relationship with Little A's pulmonologist. But while he is gentle and good natured with children, his communication with me sucks. Each appointment the doctor (let's call him Newbie) spends one minute examining Little A, then buries his face in his laptop while firing off questions and typing answers while I hold Little A. I often wonder why we have to be there for the appointments after the nurse takes vitals. We might as well be at home on conference call, given the amount of times he makes eye contact with either of us.

Because Dr. Newbie is in his fellowship (aka still training for his subspecialty) he needs to check in with the attending pulmonologist at the end of our appointments. And many times, what the other pulmonologist says to me doesn't sound the same as what Dr. Newbie says. It's terribly confusing to get conflicting explanations in the same appointment. Especially now that we're dealing with tracking down a less-than-straightforward diagnosis.

I balked at Dr. Newbie's idea of immediately putting a scope down Little A's lungs to have a look around. When the attending physician arrived, I explained that I was concerned because I kept hearing the same phrase from everyone involved: To be on 'the safe side."

  • I had taken Little A to the pediatrician before vacation for an iffy cold that in retrospect, would certainly have cleared up without any intervention. I did it "just in case."

  • Her pediatrician sent Little A to be Xrayed this last time despite the fact she didn't hear clear crackles or wheezing in her lungs. "Because of her history, let's be cautious," she said.

  • And now the pulmonology dept. is saying this latest Xray is evidence that, just to be on the safe side, we should do more testing.
It's not that I don't want to discover a potentially serious problem in addition to the asthma. But I am haunted at the prospect of such aggressive testing when we are not 100 percent sure it is needed. Usually a parent wants to hear that tests have come back clear for their child. But if we jump in with both feet on this and Little A is poked with needles and surgical instruments, I can't help but feel like I won't be quite as elated as I should be if this syndrome is ruled out. Instead, I'll be sad at the thought of what we've done to my little girl needlessly.

Off to email the pulmonologist some pointed questions. More on this soon ...

1 comment:

Lori said...

Oy. This sounds so hard, frustrating, confusing, worrisome... all of the above. I wish I had a crystal ball to loan you.