That Opinion Saved Avery's Life

Today was just about the same as yesterday.  Avery is still in a lot of pain.  We are alternating and overlapping Tylenol and Motrin at the max dosage, constantly, but she still seems so miserable.  I’m hoping that tomorrow we can get into the Dr’s office and get her something stronger and have her g-tube looked at.

 

 

I really feel the need to address something about my blog and our situation.

I realize that not everyone who reads this is going to agree with what I have written regarding Avery’s medical care.

Since we have been stationed at this base (two years) we have seen the same Pediatrician.  She has taken excellent care of Madi and Kailee.  We have never had so much as a peep of a complaint about her, her bedside manners, her decision making or anything else.  She was incredible to our family.

Avery’s medical condition is complex.  It wasn’t clear from the minute we realized she was struggling what was wrong, and it still isn’t.  However, there were several tests, small procedures, blood draw tests or just questions that may have been able to prevent Avery’s condition from deteriorating to where it is right now.

We feel as though we were looked at during the last three months as the CAUSE of Avery’s failure to thrive, instead of looking for something deeper and more clinical.  Because of these decisions Avery is not able to get certain tests done that are imperative in her condition to helping to understand what is causing her failure to thrive.

With that said,

We have the right to express our opinion.  You have the right to disagree.  However, you can read every word of this blog and find that in no way have I degraded, insulted or undermined the Dr that was caring for Avery.  I have simply stated the facts.  The facts are that Avery was brought in for THREE months with a declining percentile.  I was repeatedly stating that I was having difficulty getting her to eat.  For three months she was seen at least every two weeks.  At any point a simple swallow study could have been done and the results may have showed something that was causing her to suffer unnecessarily.  It was not done.  The last week Avery was seen on base I sat in the clinic office every single day and was watched as I fed my child.  Meanwhile, her condition was deteriorating.  She was refusing to eat, eating small amounts and puking massively.  The Dr was not present, not attentive and didn’t see us except on the last day.  Those are FACTS.

My opinion is that the Pediatrician on base is an excellent Doctor.  She is intelligent, strong-willed and most of the time her decision making is correct and accurate.  She doesn’t want to unnecessarily medicate, test or run procedures – and I respect that.  She is an amazing pediatrician for those families who just need well baby check ups, ear infection checks, or something to treat the occasional illness or cold.  However, in my OPINION, because MY child has advanced medical needs – we will be seeing a civilian Doctor who is in a practice that is regulated and overseen by several other Doctor’s.  Our civilian Doctor meets regularly to discuss intricate cases and see if another Doctor has a differing opinion, and all opinions are thought of as valid options. (Hence Avery’s geneticist visit, g-tube, OT therapy, etc…).  If you are happy and content with your pediatrician, stay with that Doctor!  More power to you!

However, if you are in our situation, feel free to question your Doctor and seek second opinions.  I knew something was wrong with Avery and I sought out a second opinion.  Our second opinion proved to be life-altering for our child.  I will never apologize for sharing our story, telling others what we have been through and encouraging people to ask questions, research and decide for yourself.

For whomever it was that felt the need to report my blog to the Medical group – you have done nothing but make yourself look ridiculous.  I am not encouraging people to question the Dr’s ability to make educated decisions for their child.  I am only stating that IF the person’s child has complex medical issues or they feel they are not being heard, it is OK and in their RIGHT to get another opinion.  And I am certainly not telling families to run to the TriCare office and demand a civilian Doctor.  That’s just not who I am.  We have a deep level of respect for the Dr on base.  Nothing would change that.

And with that said, I’d like to state that TriCare did not cover our second opinion.  I didn’t get a referral.  We paid out of pocket to get another opinion, and that opinion saved Avery’s life – literally.

And in case you aren’t on Facebook (which I’m assuming you aren’t)

I just want to say - I know that a lot of people here love the pediatrician, and I respect that. We loved her very much, until our family had issues. Now, I respect every person's choice to go see her and would NEVER advise changing Pediatrician's if you are getting the excellent care your family needs. However, I would ask that each person respects my family's choice to NOT love her choices with our daughter's medical care. Avery's medical condition was preventable, 100%. We have real, concrete reasons to not take our family to her. We also have the undeniable right to express our concerns and short-comings with our children on our Facebook, Blog or wherever else we feel is necessary. I have not gone around bad-mouthing the Pediatrician, nor would I ever. She is an absolutely incredible woman, and until we had problems with her, we never did. So please, respect our family and the RIGHT we have to 'free speech'. After all, if you are reading this and on this base - your husband fights for that right.

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So with that said, I hope everyone has a wonderful evening.