Cancer · Chemo mom · Childhood Cancer · children · Family · Love · Motherhood · Parenting · pediatric cancer · Uncategorized

Listen to Your Gut

We got a bill in the mail today… which really isn’t that weird, except this one comes in periodically from a physician who will NOT be getting paid for the supposed service for which he is charging us.

The bill is for a physician’s visit over 7 years ago.  You read that right.   SEVEN years.   The physician happens to be the pediatrician that told me I had “First Time Mother’s Syndrome” because I thought something was wrong with my then 9 month old baby and I kept going back to him for the same complaints, bloody stools, vomiting, screaming baby.  I’m going to refer to him as Dr. Inept for the purposes of this article.

This bill was for the visit where he diagnosed me with that horribly insulting “syndrome” rather than diagnosing my daughter with anything.  This was the day before I took her to a pediatrician that DID listen, and DID palpate Sophie’s tummy and DID refer us to the liver doctors at Shands Hospital for the worst ride of our lives.   Needless to say, he didn’t do his job that day or any visit leading up to that day, so he’s not getting paid for anything from that visit.

Holding the bill, I inevitably slide back to that morning that I first got a bill from this idiot.  And the phone call I had with his receptionist, cause she wouldn’t send me through to him.  When I slowly explained to her that the morning after we saw him, a DIFFERENT, BETTER pediatrician sent us to Shands where the liver team proceeded to admit her for testing and then set up a liver transplant evaluation. (At the point I got that bill we didn’t know why she was in liver failure, just that she was).  I told the receptionist what that Dr. Inept diagnosed ME with, and she was REAL quiet.  I then informed her that they could send the bill to me until they were blue in the face, I wouldn’t be paying it, and if they sent it to collections, I would be suing them for everything they had and then I would go after any person that ever had the misfortune of going into business with them.

I was angry.  Can you tell? I may not have been right, but I was angry.

I say all this to tell you a lesson that I learned because of Dr. Inept.   I.WAS.RIGHT.  Dr. Inept was WRONG and me, with no healthcare experience, a first time mother, I WAS RIGHT!!!

At that point, Sophie had been having blood in her diapers for months.  MONTHS.  She was spitting up half of her food.  She wasn’t growing.  She was tiny and falling off the growth chart.  We had heard from so many ER doctors and pediatricians that she had GERD, a milk allergy, an anal fissure (to explain the blood), and the spitting up was normal and the non stop crying was Colic… and I kept taking her to doctors, over and over and over.  I KNEW something was wrong.

She had Langerhans Cell Histiocytosis (a blood cancer) in her liver, spleen, GI tract, and pituitary gland (learn more at http://www.histiocure.org) and was in liver failure.  She was in liver failure on the day he diagnosed me with “First time Mother Syndrome.” And if I had listened to any of the physicians we spoke to, she wouldn’t be alive right now.  Instead, the day I was diagnosed by Dr. Inept, I called another pediatrician’s office FROM DR. INEPT’S PARKING LOT, while sobbing, and they agreed to see Sophie the next morning.

During that appointment, we were referred to Shands Hospital for an inpatient stay, biopsies, ultrasounds, and eventually (the next month or so) a liver transplant evaluation.  Five months later they diagnosed the cancer and 23 months of chemo started.  By some miracle, she survived.  The only reason she’s alive is because I called and INSISTED SOMETHING WAS WRONG to a wonderful nurse who listened and put me on with a pediatrician that LISTENED to me.

So, if your gut is saying that “this isn’t working, something is off,” then you follow your gut.  You find a doctor that listens to you.  You talk and yell and persist, and if you have to corner a doctor and tell them that they have an obligation to actually LISTEN to the PATIENT ADVOCATE, and that their medical insurance would appreciate it if they didn’t get sued for being wrong, then you do it.  If you have to tell them to run the stupid tests to be 10,000% sure, then DO IT.   You haunt their offices.  You show up weekly, daily, whatever it takes.  I’m not saying being angry or rude or mean or abusive.  I AM saying that you CAN ask them “What if you are wrong?  What if she has something and you are downplaying the symptoms, or it’s something that is strange or rare, and you miss it? WHAT IF YOU MISS SOMETHING BIG?”

We nearly lost our child.  Sophie’s cancer is VERY, VERY, VERY RARE.  And it hit us.  If that can happen to my family, plain jane, never really stood out from the wallpaper, normal family, then it can happen to you.

Follow your guts, Moms and Dads.  You know your kids better than any other person on this planet.  If your gut says something’s off, then it is off and you have to do something about it.

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2 thoughts on “Listen to Your Gut

  1. Big kudos to you. It’s easy to be intimidated by the medical community, but your priority is your child, while theirs is to keep the numbers moving in & out of the office smoothly. I was given the “new mom” response repeatedly, along with worthless advice that I did my best to follow, ignoring my gut. After more than a month, both my daughter & I were so sick that I did get aggressive & demanding & I did mention a lawsuit if they DARED put me off again & demanded they schedule a same-day appt. for my child or I’d be driving to another hospital over an hour away, & if they found something, the original clinic would be dealing with my lawyer. Some of the “triage” setups they have are ridiculous; the nurses aren’t properly trained or equipped to rule things out over the phone & decide what warrants a doctor’s visit, but they do! We ended up with a same-day appt. with a different pediatrician & there was a diagnosis made that day, thankfully nothing as severe as what you went through, but it still took another month before we had everything under control. That’s over 2 months that my baby struggled & I myself became sick with exhaustion when we could have been helped much sooner; now, if I have a concern & I don’t feel I’m being listened to, or the steps I want to relieve my concerns aren’t being taken, I will go full-court-press, & if that makes me a b!tch in their eyes, that’s fine, b/c my priority is & always will be my kids’ health & safety, not their stats.

    Liked by 1 person

  2. I feel very thankful, that we did not get the run around from our pediatrician! Alexander had been just not right, and we checked in, with a different one, and was told it was just a bug. A few days later he still wasn’t right, and we went back and saw the same MD. She then sent us to GI, which thankfully we were able to get in a week earlier than we first thought. Just a few days later we were in the ER for more testing, and finding out Alexander had a mass in him abdomen. He was 8 months old.
    Throughout the treatment most of the doctors and nurses were wonderful. But there was a few times that “mean mommy” had to come out to make them listen to me!!!!

    One of my daughters was sick once and had a fever. She clearly looked sick – sad eyes, red cheeks. The nurse took a forehead temp and it was “normal” . I told her to just TOUCH her and get an ear temp. She did and it was over 100 degrees!

    yes, ALWAYS listen to your gut. Be a mean mommy when you have to be, and remember doctors and nurses don’t know everything!

    Like

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