Worrying about zebras: Medically fragile children and special needs

 

 

It was a heart breaking sight.

A Brave Hero with coban and a cotton ball snugly wedged inside each elbow cranny.

Twice they poked him. Twice they failed. The kid simply refused to bleed.

We walked out of the hospital Reed, Parker and I, holding hands in a horizontal line of support. Blood draws are never popular. Especially so today.

 

Reed is holding Parker while the rest of of us are holding our breath hoping that this poke hits the sweet spot. It didn’t.

 

 

Parker’s heart rate is up. His oxygen needs have increased. He’s junky sounding and there is some highly suspicious stuff making it’s way through bugger evolution way up in his nasal passages.

I sleep better when Parker’s heart rate is where it should be at night. You know sure as God makes little green apples that when Parker’s heart rate and oxygen needs increase something is on it’s way.

I’m worried that perhaps Parker is retaining water. He spent years on diuretics. According to his Pulmo that theory doesn’t fly. She feels that he finally looks healthy with all the weight he is still gaining. Instead of looking like a kid that needs a trach, he looks like a kid that just happens to have a trach.

Most parents would be thrilled to hear those words. Me? I keep thinking those words may have jinxed the hell out of us. On Monday I plan on pleading to have a chest x-ray done just to make sure something isn’t trying to wreck havoc with a certain Hero’s heart. It’s happened before.

Do I sound paranoid? I am. Parents of medically fragile children quickly lose their innocence when it comes to what can happen to one of their kids. Experience teaches you that often those hoof beats you are hearing really are zebras instead of mere horses. What previously could have never happened in a million years often finds its way to your child over and over again. You become used to hearing medical professionals tell you that they’d never seen anything like that……until they met your kid.

It’s a distinction you and your kid could live better without. Literally.

I’ve said it over and over. The Down syndrome is something that we have never regretted. The pulmonary hypertension still kicks my soul on a regular basis.

A sucker punch way below the belt of my faith.

Your prayers?

I’d love them.

About Tammy and Parker

Special Needs Blogger, and homeschooling Mom, heavily involved in advocacy for all kids with special needs in Utah.

Comments

  1. Prayers being offered as I type. Praying for a good night’s sleep AND a reason for it.
    Blessings,
    Alyson

  2. Prayers are with you as always! Trust your gut and insist on that x-ray, mamas always know their babies better than doctors they see occasionally :)

  3. My prayers, and my kindred spirit are with you and parker. Phoebe has Down syndrome and cystic fibrosis which give us similar scares with the lung issues. I hope she never needs a trach, but it is not out of the question should the need arise. Phoebe-“We’ve never seen this before”-Borkowski should be my child’s full name. But that phrase sends my mental status spiraling into panic mode. Suddenly, Ive become the expert, and I do not think I have the medical knowledge needed to call myself any kind of expert. Except, more often than not, I am the super expert. Which I am sure you know the panic that causes when you make a decision to do something with parker and deep in your heart you do not know if that is right or not. I HATE that feeling, but sometimes you have to step of that leap of faith. Just this March when Phoebe was coughing up blood, the local ER told me ‘no big deal’ that I should just take her home and give her fluids. (I kid you not.) I was livid to the point of tears and put my foot down to say, NO! I drove her to Houston that night and they admitted her immediately. It pisses me off when I have to be the adult, AND the medical professional. I should just be the mom, and the comforter to the medically fragile child. I mean… isnt that enough?

  4. :( Here’s hoping that he just works through it and you have a beautiful x-ray. Hate the way the floor can fall out beneath you in an instant, with no warning whatsoever.

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