Tuesday, March 20, 2012

Rant and RSV

I wrote last week about Chiron's trip to the ER due to bronchiolitis and a fever on March 6.  What I haven't written about is the aftermath of this trip in the week and a half after.

Quick context: I took him into the ER Tuesday evening of that week due to wheezing that was accompanied by a fever.  We were seen, he was given some breathing treatments, some Zofran for his vomiting from the cough and was started on prednisone.  Easy, right?  Continue albuterol as it helps, give prednisone to help him beat this cold, keep fever down to keep respiratory rate down and all is well.

He was tested for RSV and flu in the ER.  In fact, he was actually checked for RSV TWICE because we agreed he could be used in a trial for an even more rapid RSV test.  This was actually one of the reasons that our primary pediatrician asked that I take him in that night rather than just managing his symptoms at home.  However, when I asked the doctor caring for him in the ER what the results of the tests were, I was told "since we treat the same, I don't disclose RSV or flu results to parents as they do not know how to appropriate use this information."  When I pushed her on this further, she told me that this was an "evidence-based medicine approach."

I probably should have pushed more and at least asked to see the attending, but in my head I decided that this most likely meant that his results were negative and she was worried about a parent putting too much credence in a possibly false negative result and that's why she wasn't telling me.  I argued with her for a couple of minutes, but in retrospect, should definitely have pressed harder as I truly believe that as a parent I am the most constant factor in Chiron's care and really am the final arbiter of his continuity of care.  That's where I messed up.

That said, I shouldn't have HAD to push to get this information.

He did all right over the next few days, but did continue with some fevers that spiked high (105 level) at the beginning of the next week and so we saw his primary care pediatrician on March 14 (a week after the ER essentially).  She asked about his ER visit and acted utterly shocked when I told her that I did not know the results of his flu and RSV tests despite having asked and had in fact been told that it was policy that I COULDN'T know his test results as a "parent".  She moved past shock towards anger/irritation and told me that she would call and work to get the results as not giving them to me was nonsensical to her in general and definitely inappropriate towards a parent who was discussing H&H values with the clinician and was very familiar with her child's medical record.

She called me within half an hour of our leaving.  He did have RSV.  The doctor KNEW this at the time, but not only did not tell me of her own accord, but actually REFUSED to give this information when I made a direct request for it.

I was a little agitated about this and posted the scenario to Facebook.  In discourse with a number of friends, I realized that I was more than a little agitated.  I really felt that this unwillingness to provide me with this information represented a serious issue.  I have a friend who works at the hospital and she actually provided me with the contact information for the right person to address a letter to the hospital to and so I wrote a letter.  I mailed it yesterday and will be interested to hear if I get a response.

To be clear, I am not concerned about the quality of medical care that he received there.  Between his time on floor and in the ER, I have nothing but positive things to say about the medical care provided by this hospital.  However, I feel that this communication failure is significant as it both communicates an attitude that parents are assumed to be incompetent and purposefully withholds information from the parents that could be used in decision making!

While the majority of parents are not medical professionals, they do represent the individuals who spend the most time with the child and are ultimately responsible for the child's continuity of care.  If information is withheld from me, I can not effectively do this for him.  And this unwillingness to communicate makes me feel, rightly or not, like she did not have the time to effectively communicate with me.

And last part of my rant: I really do believe that withholding this information from me represented a public health risk.  RSV can be a very serious illness and particularly if transmitted to a very young baby or one who is immunocompromised can easily have lifelong health complications or even result in death.  Luckily, we recognized that he wasn't feeling great with just the bronchiolitis and did not expose him to any newborns, but we were not given this critical information by the hospital.  I acted on my gut and had Paul stay home with him rather than dragging him to Dallas and back, but I shouldn't have had to act on my gut.  I should have KNOWN he had RSV.

It's a teaching hospital and so I'm going to take a positive attitude and hope that this can serve as a teachable moment.  We were lucky and there were no serious repercussions from this incident, but there is no guarantee that this will be the case next time.

And as promised, a bloody ear picture.  When I took him into the doctor because his fever had spiked back up, she started trying to scope his ear, but it was so inflamed that it started bleeding.  It was obvious from that much that he had an infection there and thus a clear cause of his fever.
Last reflection: his fever actually was the highest in the two week period the night after we saw the pedi and the next day or so.  He was on every 3 hour doses of Motrin alternating with Tylenol both at the weight specific higher dose rather than the general window.  That night when he was still at 104.8 after a dose, I had two reflections.  First, he is a MUCH better sport than I am with that high a fever.  When I had mastitis a year ago January and was running in the 104s to 105s, I didn't want to do anything.  He was still playing on.  And the second reflection is that I had no desire to take him back to Dell and negotiated with the on-call nurse to keep waking him up and checking throughout the night rather than go back in.  I think I would have wanted to take this course anyway, but it scares me that my feelings about the attitude of a resident might make me reticent to take my child in.

So, do you think I'm crazy to be bothered by the withholding of this information, or would you be upset too?  I know it's a bit of a rant, but I really think it is based on a very real issue. 

A friend who I work with who is competent at you know mailing things sent it for me yesterday.  Since it's in town, they should have it today or tomorrow.  I know that they have a written policy that they must reply, but I don't know what the time frame is.  I feel like hearing something by middle of next week will help me feel as if they are taking the issue seriously.  I expect that I'll update here regardless.

And I promise I'll revert back to normal cute pictures :-)


  1. That makes me so mad!! Don't you have a right to your medical records under HIPPA? What a jerk. I'd be like, if the tests results don't matter, you shouldn't have done them and I'm not going to pay for them. How does he know you don't have a close family member or friend with a compromised immune system?? That seems like malpractice. I say you punch him in the face.

    1. Doctors can withhold information and it is sometimes in their interest. I think it would have been more of a deal if I'd requested the results in writing, but who does that in the ER?!?

  2. As a parent of a preemie I would DEFINITELY want to know if my child had RSV. RSV is very different than just a 'cold' to a parent of a preemie and the pediatrician speaking to you should have known that. It's your right as a parent to know what your child's medical status is. RSV might not mean anything to some people...but to a parent of a preemie it does.

    I would also want to know because I wouldn't want to expose it to anyone else either, or at least be able to give anyone my child had been in contact with a heads up. How does that doctor know you're not in a "Mommy and Me" group with 20 other preemie moms?!

    I agree with your plan to write a letter 100%!

    1. I'm in a Facebook group of parents from our hospital who had a child or children in the NICU around the time that we did. Chiron is actually one of the oldest kids in the group. I am personal facebook friends with some and so they got involved in the discussion, but perhaps I should take the conversation there as well. My brain is now terrified by the idea of what if there had been a meet-up that weekend. He didn't have a fever at that point and basically didn't that whole weekend...

      I did include in the letter a reference to his status as a former 29-weeker.

      Though thinking back, I think that something the doctor said may have indicated that she thinks that former preemie parents overreact about the label RSV?


  3. I think you have every right to be agitated by the withholding of that information. It might have been different had you not asked, but I feel it is inexcusable. For all I know, my Tot may have contracted RSV at 3 months from someone who wasn't given information to help prevent spreading it.

  4. That poor sweet baby !
    Can anything happen to you being exposed to RSV while pregnant ?

    Would it have changed his care had you been told of the positive ? Would there have been a different plan in his recovery ?
    If so, then yes....I would make a huge deal about it.

    I'm mad just reading about this.
    Oh that picture just makes me so sad. I hope he's feeling better.

    1. I'm pretty sure that RSV isn't a risk in pregnancy as I've definitely had it before.

      We wouldn't have changed the plan much, but the pedi said if she'd known she would have wanted to see him in the office to follow up on how he was managing it. Former preemies have a much harder time with RSV. And we definitely would have been even more conservative in keeping him home.

      I believe the pediatrician's office is also following up with the children's hospital as well. So hopefully this doc does learn from this!

  5. Speechless. I had not seen a post for a while so was just coming over to check on you. I hope you were very firm in your letter.

  6. I would be furious- and it's my understanding that a Dr. can only withhold medical information if there is a question about the person's right to get the info (meaning are you truly the person who is allowed to inquire) or if revealing he information will lead to the patient being harmed. This doesn't seem to fit in either scenario- and I know that if a Dr. denies info he/she has to do it in writing within 30 days. I'll be really interested to see how the hospital responds.

  7. I would have been livid - it's your son's health you SHOULD know the results of any and all tests. Isn't that your right as a parent?

    His poor ear! My son has a double ear infection and his fever was as high as your son's after he was diagnosed, too. Strange!