On Hawk Walks, Brave Heroes, Weird Rashes and Pulse Oximeters

The stage was set for a magnificent day.  My kids had even talked their Dad into letting them join Parker for his very first Highland Hawk Walk.  The 16 year old felt it was important for him to be there in case Parker got tired and needed someone to carry him a lap or two.  The 20 year old and  13 year old  wanted to head  Parker’s cheering squad, and just be a part of Parker doing something they had done at his age.

 

Falling to sleep after our trip to the AF lab today.

 

Instead our day included Zofran, Moltrin, high temps and a trach culture at the American Fork lab, in hopes of trying to figure out what we are dealing with now.

For the last two weeks there have been times when Parker has put his fingers in his mouth, deliberately making himself gag,  obviously trying to get something to come up and out.  Often, after one of these oral excursions, we’ll find a mucus type of substance in his mouth.  Whether it’s from his sinuses coming down, or his lungs traveling up, is anyone’s guess.  His sinus CT showed pockets of mucus, but no lingering infection that would require sinus surgery.

For a kid who aspirates on his own saliva, trying to make himself throw up is not a good hobby.  Aspiration pneumonia anyone?

 

Can you see the rash on his face?  Does that look like a reaction to something to you? It’s red and bumpy.

 

Yesterday a bumpy red rash made it’s appearance on Parker’s face, but I just chalked that up to a new laundry soap.  He’s held a full day’s worth of bolus feedings with no gagging issues and I thought we were in the clear.

This morning a waking temp of over 100 (Parker usually runs cool.  His morning temp is usually around 96-97.) and we knew something was up.

But just in case the morning gagging and temperature weren’t enough, we also had enough tan colored junk coming out of his trach to float a boat.  Stuff he was coughing up and stuff we were suctioning up.

Parker’s sleeping heart rate was in the 100s, which just confirms our suspicions, the kid is sick.

There are times when I really wish we didn’t have that sat monitor.   Watching that heart rate has been the source of more than a few gray hairs.  It’s almost an obsession.  If I check it at night and all is well, I sleep soundly.

If not, then I wind up tossing and turning worrying and wondering.   I can’t even count the nights I’ve sat up watching those numbers bounce around…..or steadily climb.  Even though I know there’s not one thing I can do about it, especially at 2:00 a.m., I still find myself trying to will those digits into acceptable levels.

Maybe there should be a SAT Addict Recovery type of group.  I’d be the charter member.

Truth of the matter is Parker’s sats really haven’t been back to his baseline since a few weeks before that last right heart cath.

There’s something brewing, I can feel it in that special place in my Mama gut activated moments after I gave birth to my sixth child almost seven years ago.

It’s just the what that we can’t put our finger on.

It sure has reaffirmed how fragile this kid still is.

And how totally precious.

 

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  1. Heather
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    Sep 24, 11
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Hawk Walk 2011

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