Update on Parker…

by Janice

ParkerRemember Parker??? The sweet little star of 5 Minutes for Special Needs and Praying for Parker?

I told you all about my first time meeting Parker this past September. I even wrote a post dedicated to sweet Parker for (in)courage.me.

Little Parker is heading into surgery Thursday and I asked his mom, Tammy, if she would write a post to update us.

Here it is, in Tammy’s words:

Update on Parker

We started out pretty hopeful.

All indicators (EKG, boodwork, echo) told us that Parker’s Pulmonary Hypertension was getting better.

That was before the right heart cath that took place the end of September.

After that right heart cath, reality was painted with a stroke not nearly as upbeat.

Our cardiologist explained that there must be something that we were missing. Some pathway that wasn’t being addressed. Some unknown that was keeping Parker’s pulmonary values in the severe range.

A range that insures a child’s life will be significantly shortened. When Parker’s test results were reviewed by his Pulmonologist we were told that Parker could maybe still be here when he was 25.

But that was only if he didn’t come down with a flu or virus that would overwhelm his already seriously compromised lungs.

But 35?

Not gonna happen.

Again we were told that there must be something that was being overlooked. Something metabolic that was causing damage to Parker’s lungs, which in turn was making sure that Parker’s Pulmonary Hypertension would remain at stratospheric levels.

Lung x-rays were pulled up and compared. A before unnoticed aspiration pneumonia was discovered. That was when I mentioned the food we were finding in Parker’s trach. You could feed the kid a Cheeto and then 10 minutes later find evidence of that Cheeto in his trach nose.

Which isn’t supposed to happen.

Tests were ordered. A surgeon consulted. During an upper GI Parker’s stomach contents were caught fleeing back up from his stomach, past his trach, and most likely straight into his right lung. As if to confirm this, 30 minutes later Parker again produced a mouthful of Barium that had been administered via his g-tube. That definately got the attention of his surgeon.

But the most telling was the result of Parker’s sedated CT scan. So much damage. Inflamation and other corrosion caused by aspiration in lungs already struggling.

The surgeon, the pulmonologist and the cardiologist all believe that this could be the reason for the disappointing and scary results of Parker’s right heart cath. A Nissen, a trach stoma revision, and bronch were scheduled.

The hope is that perhaps, just perhaps, by addressing the damage in the lungs, by removing the possibility of reflux and aspiration, that it may be easier for Parker’s heart to pump blood to his lungs. Which, in turn could maybe — so very maybe — help reduce the pressures in Parker’s pulmonary artery, and thus help bring his Pulmonary Hypertension levels down to more manageble levels.

It’s so hard to know what to believe. There is a more than a good chance that it is simply too late to reverse the pressures in Parker’s pulmonary atery. Once that artery turns to muscle from such unnatural use, there is no turning back.

But Parker’s cardiologist tells me that during the right heart cath he was able to manipulate the pressures in that artery. And by doing so this may mean that maybe, just maybe it’s not too late to reverse those pressures.

Not to a point of being normal, mind you.

But to a point where 35 is at least on the possiblity chart. To where the fear of Parker catching a virus no longer overrides our desire to take him out into the world beyond our backyard.

There are those who (and maybe rightfully so) think I’m just setting myself up for yet another heartbreak by choosing to believe.

All I know is that when I take the belief out of my heart, my soul starts to dry up and crumble… So I choose to continue to believe with the knowledge that Parker’s life is not of my will, but of my Father’s.

And, ultimately, it is my Father in whom I should put my belief.

But I have a favor to ask. I hope you won’t mind.

I’m asking for others to combine their faith with mine, to believe with me and keep me strong should I waver.
Perhaps, combined, our prayers might cover more ground, soar a little higher and petition a little stronger.

Here are six ways that you can pray for Parker:

  1. Prayers that Parker will make it safely through this surgery without issue.
  2. Prayers that the recovery time might allow us to spend Christmas at home. And if not, that we can still feel the beauty and wonder of Christ’s birth even in a deary hospital room.
  3. Prayers that such a young Brave Hero can understand that what we are asking him to undergo is for his good, and not for his harm.
  4. Prayers for inspiration for his doctors and all those who will be attending Parker.
  5. Prayers for Thursday’s surgery and procedures to have a postive impact on Parker’s Pulmonary Hypertension.
  6. And finally prayers for this Mama’s heart to accept a Will that understands more and sees further than her own.

parker

THANK YOU SO MUCH for your prayers!!! We appreciate it so very much!



Email Author    |    Website About Janice

Janice is co-founder of 5 Minutes For Mom. She's been working online since 2003 and is thankful her days are full of social media, writing and photography. You can see more of her photos at janicecrozephotography.com.

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