The Wrap Up?

I was made aware of the fact yesterday, that I haven’t posted anything since before Tiana went to get her lump checked out, and that I should really let you know (if you’re not a facebook friend and don’t already know) that Tiana is doing fine.  They took x-rays and said the lump on her back is a pocket of fluid that will go down on it’s own.  We’re still not totally convinced of that theory, but it’s not causing her much pain and she’ll get more x-rays at her post-op appointment that will tell us more.  So until then, I’m just trying not to look at it too much, because to be honest it squicks me out.

Also, no, we have not yet received the lab reports confirming that Tiana had H1N1.  They sent us labs that showed she tested positive for influenza A, but there were no H1N1 test results on the sheet.  We made them aware of this, and we’re still waiting on the H1N1 culture results.  Again, we’ll see if we get them.  It seems like there’s a whole bunch of stalling going on here, and I really believe that if they could prove she had H1N1, we’d already have that piece of paper in our hands.

Now, we’ve been asked why we’re behaving like rabid badgers over this; after all, it’s over and done with, isn’t it time to move on?

The short answer is; No, it’s not.

If you want the long answer, then read on because I’ll go over our reasoning for you.  :)

The first reason is that we really feel like we haven’t been told the complete and honest truth.  Now if down the road a lab report that says +H1N1 falls into our hands, than I will eat my words and write a public apology for accusing the staff of falsifying the information they passed on to us (though I still won’t apologize for my criticism of the way they handled the situation).  Until that time though, I can’t help but feel the way I do, and it has struck a hard blow to the trust and respect I’ve had for the people who’ve been caring for my daughter over the last few years.

My thing is this…  I may not have gone to college to get a medical degree, but that doesn’t make me an idiot and you damn well better not treat me like one.  Even if I WAS an idiot, that’s MY kid in that bed, and you still better treat me with the respect that any parent in a stressful circumstance deserves.  If you’re going to play into the fears the media is spreading, and make me believe that my immune compromised daughter is about to become very ill with a deadly virus, then you’d better have some damn good evidence to back it up.  A 101 degree post-op fever does not qualify. 

The second reason I’m playing the role of rabid badger is that this brings up a very important question of immunization.  You see, once you get any strain of the flu you develop antibodies against it, and under most circumstances won’t get that strain again.  I’ve been told by a doctor whom I respect (and who happens to at least act like he respects me) not to have the kids immunized for H1N1 if they’ve already had it.  If indeed Tiana had H1N1, then we’re good, and we don’t have to worry about it anymore.  If she didn’t though, and we believe what they’re telling us, then we could forgo the immunization only to be sorry later.

Now this isn’t such a big deal for our family.  We’re all healthy with strong hearts and immune systems.  H1N1 or really any type of influenza is not likely to be anything more than an inconvenience.  Say that we weren’t so healthy though.  Say that I have someone living at home with an autoimmune disease, or something else that they may have no knowledge of at the hospital.  Incorrect knowledge of the test results could pose a much more significant risk, which leads me to my third and last reason…

We were told by several people on staff at the hospital that we had the dubious pleasure of being the first case of this sort they had dealt with at their facility.  Now while it makes me understand, and even moderately sympathetic towards, some of the major mishandling of my family, it also makes me feel like I have an obligation to those who will come after me.  It’s my responsibility to let the staff know that they can’t kick parents and patients around.  If I roll over and play dead on this issue, then they’ll believe it all worked out fine, and they won’t have learned anything when the next case rolls though the door.  However, with my stunning badger impression, I’m encouraging them to study what happened, figure out where things went wrong, and work to improve their policies.

It’s not about doing what’s easy, it’s all about doing what’s right.

Now, we’ve been told that because H1N1 is a mutation of influenza A, most places are just terming influenza A “suspected H1N1” instead of paying for the more expensive culture.  I understand that, and even respect why they’re doing it, but it’s still besides the point.  We were told that Tiana had confirmed H1N1, not suspected, so I want proof that they confirmed it.

It’s also been brought up that she still likely would have been quarantined for testing positive for influenza A.  I know and respect that as well, however; let’s call a spade a spade.  If it doesn’t change the outcome, then there is no reason to be tossing H1N1 out into the mix.  Did they think we would be more accepting of the outcome if they used the new buzz word?  The current belief is that healthy kids don’t die from the flu but they do from H1N1, so were they hoping that we would kick up less of a fuss if they scared the crap out of us? 

All I really want are honest answers about my child’s medical history.  As her mother and caregiver, I have the right and responsibility to know what happened.  I know every freckle on her body, every scar from every skinned knee, every sniffle she’s ever had, and now I don’t know if she had H1N1 or the seasonal flu; and frankly, the knowledge gap pisses me off.  It might not upset me so much if it were my choice, but they did the tests, they gave me three different answers to the same question, they forced a medication on her that she was allergic to, and they used the scare tactics.  Not only on my family, but on other parents who were questioning the new hospital policy of not allowing visitors.  They effectively silenced their objections by telling them there was a confirmed case of H1N1 at the hospital. 

Because when the truth doesn’t get the results you’re looking for, it’s perfectly acceptable to burry it and scare people into submission, right?

Also, the question still remains; why wasn’t she quarantined as soon as we informed them that she had been exposed to influenza A (or suspected H1N1)?  She remained in the general ventilation area for 24 hours after her sister was diagnosed.  If they really want to implement a system of “precautionary measures,” action should have been taken right away, not 20 (when she first started showing possible symptoms), 33 (when John and I were told to wear masks outside the room), or 42 (when they tried to quarantine asymptomatic John right along with her) hours later.

You can’t play this game halfway.  Either do it, or don’t do it, but don’t waste valuable time sitting on a fence with a picket up your ass.

Now they’re stuck between a rock and a hard place because John and I don’t roll over and play dead, and we don’t believe something simply because a guy in a white lab coat tells us it’s true.  If she had influenza A, or even suspected H1N1 without lab confirmation, then they should have just told us that.  We would have understood.  If they wanted to play the precautionary measures game, then they should have done it from the start, and been up front about it.  We would have understood that as well.  What we don’t understand is the half truths and tardy policies they tried to inflict on us.

Now, to any medical professional out there who might be following my blog; Above all else, be honest with your patients and parents in similar situations.  If you’re not, then we lose all respect for you, and if we don’t respect you than how can we possibly trust you to take care of us and our children?

If you take away nothing else from what transpired, at least learn that one simple lesson.  It can’t possibly be too much to ask, can it?