Medically fragile children.

I can’t even count all of the times we’ve had to pull Parker out of cracks that could have easily cost him his life if Reed and I hadn’t been diligent and the Spirit so adamant in  demanding our attention.

It’s a common pitfall, this falling through the cracks by medically fragile children.

When Parker was born we were told that we had reason to celebrate because we would never have to worry about him having any heart issues.

Famous last words, baby.  Famous last words.

When Parker came out of his tethered cord surgery I noticed how low his oxygen sats were. I brought that up to the nurse who brought it up to the Resident.  The Resident told me that the reason Parker’s sats were so low is because I hadn’t been picking him up after surgery to help get his lungs moving.  Uh…….I explained…..  you can’t pick a kid up for 24 hours after a tethered cord surgery.  Of course you can!,  the Resident replied.  In order to prevent blood being spilled,  the nurse called Neuro who confirmed that you can NOT pick a kid up for 24 hours after a tethered cord surgery.

The next day came and Parker was still hanging out in the 80’s as far as his oxygen went.  Way too low.  FINALLY, in what was an obvious ploy to shut me up, they took Parker down for a chest x-ray where they discovered severe pulmonary hypertension.

I was too devastated with this news to even throw an I told you so parting shot at a Resident too cocky for his own, or any one else’s  good.

I spent YEARS trying to convince people that Parker was refluxing and then aspirating on his stomach contents.  Even when I pleaded with them to perform a Nissen when they placed his g-tube they brushed off my concerns.  He can’t be refluxing if nothing showed up on an Impedance Probe they told me.  He can’t be refluxing if it doesn’t show up on a barium test they told me.  Yet each morning Parker would wake up and promptly choke on what he refluxed up from his stomach that morning.  We even found old x-rays where the radiologist wrote PROBABLE ASPIRATION PNEUMONIA.   It wasn’t until our Cardiologist called the surgeon that Parker got a Nissen placed.  Even the surgeon told me that these tests for reflux are highly unreliable.

Now that surgeon tells me he deliberately made Parker’s Nissen loose enough for him to be able to throw up over it.  It doesn’t take a rocket scientist to figure out that if he can throw up over the Nissen than he can REFLUX over the Nissen and then aspirate on that. 

When we were feeding Parker by mouth we would sometimes see what we had fed him in his trach nose.  A gold star standard that the kid was aspirating what he was eating by mouth into his lungs.  But because he passed every single swallow study ever performed on him we were told there was no way he could be aspirating on what he was eating.  Finally, after receiving miserable results from a right heart cath he was sent for a CT scan where they found evidence of guess what?

Yup.  You guessed it.

It’s not unusual for medically fragile children to be met with a shake of the head and pointed in the direction of another specialist, someone else to unload this problem child onto like some unlucky ping pong ball.

A little boy with pulmonary hypertension painting.

By the time his first FEES study was performed his epiglottis was so damn shot that you couldn’t get it to respond even if you used a two by four to smack it with.  It’s never healed and it never will.  The surgeon swears it’s from what’s coming down from his mouth into his lungs. The ENT swears it’s what coming up from his stomach and then back down into his lungs.  And all over the state medically fragile children find their days running out stuck in the middle of those who should be fighting for the lives of their patients rather than defending their own conceit.

All those years……..YEARS……. I spent trying to get someone to believe me that something was going on with this medically fragile child of mine.

And there was.

I could point out more cracks……like Parker almost dying of C-diff because it was believed he had another stomach issue even though the testing for that issue kept coming back negative over and over and over again.  NOBODY could put together the fact that Parker had recently spent a long stretch in the NICU on tons of antibiotics and the overwhelming stench together and come up with C-diff.  Instead they called us in to give him an emergency Name and a Blessing and ran him down to the Life Flight Helicopter waiting for him.

It’s a HUGE fear of mine that Parker will wind up in a miniature coffin because of one of these cracks……something that should have been totally preventable except for an ego or two too great to stop and simply listen instead of brushing me off. 

I’ve been working with Parker’s great Pedi to put together a few procedures to see if Parker is still refluxing and then aspirating the contents of his stomach or his own mucus or saliva.   Our GI, who at one time looked me straight in the eye and told me that he would be happy to place a BRAVO now tells me he sees no need, but is wiling to keep Parker overnight for an Impedance Probe…….a test we know to be inferior AND requires Parker to stay 24 hours in the hospital with a tube down his nose that I can tell you know he isn’t going to let STAY down his nose.

We meet once again, my all too familiar friend,  the brush off.

In the deepest part of my Mama gut I KNOW there is something we are missing in regards to Parker’s Pulmonary Hypertension.  But can I get anyone to give me credit for all the times I’ve been right in the past while they’ve wound up with egg on their faces?   Not so far.

I think I’m going to switch up my strategy a bit.  Instead of just going up to our next appointment with Parker and his nurse, I’m going to ask my Dad to join us.  My Dad who gave the surgeon who performed Parker’s ostomy hell and refused to let her off the hook.  My Dad who can hold his own with anyone and is as tired as I am of all the cracks there are to fall through  for medically fragile kids.   My Dad who is constantly asking how Parker has had to endure so much that so easily could have been prevented, except when he asks this question it usually involves wanting to know why so many people’s heads are stuck up their…….well, I’m sure you get the idea.

Then I’m going to make some calls to Standford and Denver, two places with excellent Pulmonary Hypertension TEAMS and see what it will take to get Parker seen.  We adore Parker’s Cardiologist, but Parker needs those willing to address all of the issues while working together as a team.

The biggest drawback will be the fact that neither one of our insurance policies cross state lines.

I’m committed.  I refuse to back down. Parker will be taken care of.  I owe him that.

Sometimes  you just have to take a leap of faith and keep believing in what your heart keeps telling you, even if you can’t get anyone else nearby to do the same.

 

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