Tuesday, July 31, 2012

Worst Appointment Ever

As I've mentioned before, Jacob's had to see far too many specialists in his young life.  The pulmonologist, the dermatologist, and today, the cardiologist.  On one hand I knew this was a long shot.  Still, even per our doctor, it was worth checking into.  I had noticed that his oxygen level seemed to be consistently lower than expected, be it at his pulmonologist appointments, when he had pneumonia in January (and no amount of breathing treatments got it where they ideally wanted), or even at his well visit in June when I first brought it up to the pediatrician.  Each time his oxygen was somewhere between 95-98%.  Not horrible, but lower than expected.  My official concern came from a blog post I read that talked about how low oxygen could indicate a heart defect--at least in newborns.  The blogger's daughter died at five days old because her pulse ox was not checked--and if it was, it would have indicated a heart problem that could have been treated.  Jacob's heart was one thing that hadn't really been scrutinized, and what if that was the cause? 

While you'd think if it was a true concern someone would have said something before now, it always seemed like the low figures were chalked up to circumstance--too much movement or that it wasn't contacting right, or something like that.  Again, if it was a huge concern I know it would have been brought up, but knowing how athletic-minded Jacob is, I didn't want to risk finding out he had a heart defect when he someday collapsed playing sports.  All things considered, his doctor admitted there was no real reason why his level should be that low, nor did she think that we should have to worry about it, so she referred us to a pediatric cardiologist.

Today was the day.  When we got there, the nurse that greeted us first was great.  She noticed the Mr. Incredible character on Jacob's shirt (he was wearing a Disney Hollywood Studios souvenir shirt), and gave him a Mr. Incredible figure right off her desk.  That was pretty legit.  She was so great, keeping things simple and fun for Jacob while she put on the electrodes and did a bunch of monitoring.  Jacob was so good and so brave.  He did awesome.  The appointment was great up to that point...so based on the title, you can only imagine how bad the second half went.

Once we got into the exam room, Jacob got a little antsy.  When the doctor finally came in, the first thing out of her mouth was, "I don't really understand why you're here."  Great.  I tried to explain my story without sounding nuts, but immediately she's like, "His levels aren't low.  Anything 95 and above is normal."  To which I said, "Well, his doctor didn't say that was normal.  She said it was worth looking into."  "Well, they're normal."  Ummm, ok.  At this point she was being so brusque that I started to lose my nerve a bit.  I mean, she's basically saying flat out that we shouldn't even be there, even though our doctor said it was fine to double check.  It's not MY fault my doctor didn't say that 95+ was normal.  Geez.  I actually got a little teary (I blame it on fluctuating hormones), because, quite frankly, I didn't know what to say. 

Later on she said, "He's asthmatic, right?" and I said, "Well, we've suspected but no one's ever told us that."  "It says it right here," she said, as she pointed to the letter Jacob's doctor wrote.  Well, it actually said he had reactive airway disease, which is another term I don't think we'd ever heard.  It's not a surprise given all of this issues--I guess it all had to have a name--but this woman was equating it with asthma and insisting that meant he had asthma, to which I kept responding that he'd never been formally diagnosed and no one ever told us that was the case.  The most instruction we've ever gotten is to give him a nebulizer albuterol treatment if he starts wheezing, which we've had to do the last couple times he's been sick.  That was always something his doctors had warned could happen, but until recently, it hadn't been an issue.  I've been thinking for a bit that I need to call the pulmonologist again because of that new development, and possibly get him formally tested for asthma.  And I will.  But it would have been helpful if someone would have mentioned that this was a reality beyond just our assumptions. 

Anyway, the rest of the visit is a blur, but suffice it to say I was miserable and feeling very stupid.  The good news is that all of Jacob's tests came back normal.  And despite the horrific experience of the appointment itself, I'm happy we did it.  It's one less question to ask down the road (and not to be grim, but if (God forbid) something ever happens to Jacob in the cardiology realm, I will have absolutely no guilt suing this doctor for malpractice...she was that rude), and I'd rather know I was an advocate for my son than to do nothing and wonder.  But the way she acted like I was crazy to ask the question just pissed me off to no end.  I could barely contain my emotions for the rest of the afternoon.  My boss has just gone through the week from hell with her critically ill mother, and she was very sympathetic in the "be an advocate", "never feel stupid" department.

Oh, and if there was any question in my mind about this doctor's mindset, I think the end of the appointment sealed it.  Admittedly, Jacob had been a handful the whole time we were in this room, and it was a little hard to control him, given my emotions and that I was trying to answer the doctor's questions at the same time.  He was playing with Mr. Incredible, trying to rip the exam table paper, fiddling with the toys in the room, opening drawers, etc.  He was a pain, no doubt.  At the end of the exam, the doctor said, "Is he always this energetic?"  I said yes, and she said something to the effect of, "Well, I'm tired...", meaning that watching him made her tired...but it wasn't said in a haha, cute but active kid-sort of way.  She legitimately seemed surprised by it all.  And I'm sitting there thinking, hello, you're a pediatric cardiologist.  If that's the worst she's ever seen, that's nothing short of amazing.  I get that a lot of her patients might be a bit more subdued, but geez, he's a four year old little boy.  It wasn't ideal behavior, but I also don't think it was abnormal.  If she thinks it is, she's crazier than I thought.

Again, I'm definitely relieved that Jacob's fine.  I'm a little annoyed if his pediatrician should have known that his levels were actually okay, or if the asthma thing is a given and no one bothered to mention it, but I'm pretty sure this doctor was just being a little extra high on her horse and annoyed with some parent who needlessly dragged her kid to the cardiologist for no apparent reason.  No doctor should ever make you feel foolish, unless perhaps there is truly zero reason to be there.  Even still...there is no denying that it was a miserable doctor experience.  That's a shame considering the fantastic nurse experience that preceded it.  But I am relieved we don't have to go back there, for more reasons than one. 

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