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.
Twitter: MommaHopeful
Sep 24, 11
ugh…ugh..and ugh.
That rash looks quite suspicious. And the other symptoms, ugh.
Poor little man! Poor Mom!
Sending you extra prayers and love for a quiet, restful weekend full of antibiotics and pedialyte!
Love you girlfriend!
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The rash looks viral, suspiciously like roseola, which nearly always has a fever relatedk. I have to think back to the gym incident. With Parker, bacterial secondary infections are soooooo likely that I would have him on antibiotics anyway. Are you getting emails from me, BTW??
you’ll have to let us know what the rash is….when mine have rosela is more pin prick looking..i hate rashes – i’m the most itchy person there is – when i see a rash on someone else i start scratching!! hang in there – poor little man!
Well, crap…hate hearing this…saying a prayer.
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Strep? :/
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Poor Parker! it sounds definitely suspicious to me – i’d suspect an early stage/slow moving pneumonia with those symptoms, including the rash. My med-fragile kiddo would get the craziest rashes that didn’t even seem related to breathing in any way when she was getting aspiration pneumonias every month of her first year of life.
I’m a fellow Sat-addict. I love/hate our machine for the same reasons as you. I hate being that mom whose all “she’s getting sick, do something now” simply because she had a few minutes of spiking into the 180’s, or worrying about how many apneas she is having when its going crazy at nite with the beeping…
I hope the labwork from yesterday helps your docs figure out a way to help your little man feel better soon. If its inconclusive and your momma gut is still going haywire – ask for a CXR just to see and hopefully put your mind at ease. We had multiple pneumonias that did not present with a hacky cough or crackly lung sounds – just a lung full of fluid and lots of what you described in your post.
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I hope you’ve found something. Aaron sometimes gets a prickly heat rash like that, but he’s never had it on his face. And I agree with the sat monitor. I’ll join your group too. For me it’s usually the sat rates, but the past week, it’s been heart. We went in for same-day surgery on his feet just over a week ago on Friday, and were discharged Tues evening. Yeah, high heart rates. Managed to get it to start to come down before we left, but he wasn’t back to baseline until last night. So, so sorry you’re dealing with this. Good luck and I’m praying for both of you!
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Twitter: therextras
Sep 25, 11
I suspect the meeting room for your recovery group would fill quickly.
Praying for Parker. And Tammy.
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