Tuesday, February 10, 2009

Nearly Five Years

Tuesday, February 10, 2009

They all missed it. For nearly five years... he's been unable to speak discernibly. "That's because he is developmentally delayed," they said. For nearly five years... he's been in pain. "Oh the reflux is because he's got low muscle tone. He'll grow out of it. A Gastroenterologist" What for" You don't need a referral to a pediatric GI. You don't want to go looking for trouble. You need to stop worrying so much."

For nearly five years, he's battled one sinus infection after another. "It's just the way he's built.. not enough room in the sinus cavity. He'll eventually need a adenoid and tonsillectomy. Stop worrying so much, this is just the way it is with kids like Austin.

And so I did.. I stopped worrying so much. I stopped wondering why all his friends were speaking clearly. Maybe Austin just needs more Speech Therapy. I'm not working with him enough. Maybe this antibiotic with clear up the sinus. I just need to be patient. He'll get better.
But he didn't. Because for nearly five years they've all been wrong. All of them...2 pediatricians, a developmental pediatrician, 3 anesthesiologists, 2 Ear, Nose and Throat doctors, and 3 speech pathologists... they all missed it. For nearly FIVE YEARS. They all made assumptions. And his Father and I .... well, we listened to them. I listened to them. I didn't challenge them hard enough. After all, they are experts. All 11 of them... educated, trained professionals.

Then we met Dr. Sobol. And I'll forgive him his initial reaction to my son. Before our appointment, I went to the pediatrician's office and waited an hour for all of Austin's medical records. I hand delivered the ENT notes to the doctor's receptionist. I made sure she put them in Austin's file. The ENT never even looked at them. How do I know? Because when he came in the door, I saw his look of shock when he saw that Austin had Down Syndrome. His attitude with me was defensive and snippy as I went over the latest 4 bouts of sinus infections.

Then he asked something odd.. "How do you know they were sinus infections?"

Um.. cause the pediatrician told me so? Is this a test?

A medical student stood nearby and tried to appear interested.
He came in close when the doctor leaned in to peer into Austin's mouth. And I'll even forgive the doc's question, "Will he let me examine him?" Austin just sat in my lap and looked at him with his big brown eyes blinking.. not crying, not fussing, not even wiggling. Just waiting...cautiously hoping this doc wouldn't hurt him.

It took the ENT five seconds to see what 11 professionals missed. He jumped back excitedly and called the med student over to take a look, "He's got a bifid uvula, a submucosous palate and reflux."
"WHAT?" He looked offended at my yelp. Then he grabbed some spray and shot it up Austin's nose. "I'll be back in a minute. We are going to take a closer look with a nasal endoscopy."
I looked baffled and the nurse says.. "He's gonna stick a camera down Austin's nose and he's NOT gonna like it."

Thirty minutes later, Austin, Jessica and I leave the ENT's office in shock. No it's not life threatening, leukemia or his heart... but it explains a lot and it shouldn't have been missed. The reason his nose is running is because he has reflux, there is a HOLE in the back of his throat where his soft palate is supposed to be and his the contents of his stomach is refluxing up into his nose. He isn't talking because, basically the palate is what helps you make sounds... and his isn't working. The bifid uvula.. is that "punching bag" that hangs down in the back of your throat. Austin's is split in two. How did they all miss THAT for nearly five years.

So now the appointments start again. A craniofacial expert who will examine how much soft palate Austin does have and decide if he will need corrective surgery. A GI doc who will determine how much DAMAGE has been done by the undiagnosed acid reflux that's been occurring for nearly five years. And, what if anything needs to done. Austin is on meds and already we can see a change in him.

He's happier.. more energetic. And we aren't constantly wiping his nose.

Yeah. I mad at the doctors and professionals who didn't take the time to reason out why this child was spiting up and not talking. I mad they just jumped to conclusions without really LOOKing to see if there might be a physical reason for this condition. But I'm really madder at myself.

I should have pushed them harder. I really feel like I let Austin down. Acid reflux for nearly five years. What kind of pain must this kid have been in....

Keep the Faith.

And Pray that this IS the missing key to unlocking Austin's speech.


datri said...

Amy, I can't even imagine your frustration with this. Hopefully this will be the answer.

Bethany said...

I'm so sorry ... please don't feel guilty. We can't always make the right decisions and what matters is that now you are fixing things. I hope you get answers from the next doc and that speech is just around the corner!

Melissa @ The Inspired Room said...

HOLY COW, that is SO unbelievable. So frustrating, I can't imagine how you must feel! But it is NOT your fault. Thank goodness they are figuring this out (finally) and you can see improvement in your sweet son's life!



Sharon said...

I just came across your blog for the first time - you have a beautiful family!

I am sorry that you are feeling guilty - but, really, you have done everything possible....he's seen all of the doctor's he should have seen. You've done your very best and then some.