Tuesday Reed and I took Parker up to PCMC for a swallow study.
Why? To see if Parker’s surgery to tent his epiglottis worked.
When we got up there, I went to check in only to discover that our appointment was actually for Riverton, NOT PCMC.
Ah, yes. Me…..at my finest. Again.
Fortunately they were able to get a team together and get us in at PCMC anyway. I’m not sure but it may have been the look of sheer panic and desperation that spurred everyone into action.
I was surprised to see that the speech therapist had set up several different thicknesses of food to test with. When questioned about this we were told that she had set up exactly what our ENT had ordered.
Fixed Photo Compliments of Parker’s Friend GiGi!
On film everything looked as though it went down the right way. We left feeling excited to think that Parker might be able to eat!
And then came bedtime.
And the increased oxygen requirements.
And the heart rate that turned bonkers.
And a Mama who sat in the rocking chair watching and worrying. Who needs sleep when there’s something to worry about, no?
It came to me as I was watching and worrying, that these symptoms are the same exact ones for a child who has aspirated on something.
What, though, could that something be……?
Oh. Wait. I know…..
……the liquids from the swallow study perhaps? The liquids I specifically asked about? The ones that looked as though they went down the proper plumbing on the films?
I have a bit more experience under my belt now. I won’t be feeding Parker anything until another FEES study has been performed. It may be that this surgery helped with Parker no longer aspirating on saliva and mucus, but doesn’t protect when certain thicknesses of liquids are force squirted down your throat.
Maybe, the surgery wasn’t as effective as we had thought.
Talk about that damn rug being pulled out from under our hopes….. again.
Hmmmm. The thicker liquids are supposed to be easier to swallow without aspirating. At least that is what I’ve learned about swallowing so far. Force squirted?
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Yes, the thicker stuff is easier. But they did several thicknesses of stuff. From thick enough to scoop up with a Cheeto (yes, I brought a bag) to thin enough to put into a syringe and then squirt it into his mouth because Parker has never been to the point where he could drink anything from a cup. He went from bottle to g-tube.
He’d have much less saliva going down his throat at one time than he did the thinner liquids he had going down yesterday.
The last time Parker went through a swallow study test they thought every thing was fine too. So we were feeding him more and more each week…..and that was simply dumping directly into his lungs. But we didn’t know that until Parker had the more invasive FEES study.
I am so sorry you have been met with discouraging news. I am not a fan of the swallow study, seriously I’d like to see a kid who isn’t crying and distrubed over the whole entire setting…I could go on and on…AND, who wouldn’t aspirate when you are forcing stuff in their mouths WHILE they are screaming bloody murder. I’m sorry, I am praying his sats go up and this IS not an aspiration issue.
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Ugh sorry to hear that. You sound like me up at night. Sending you hugs and prayers.
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Bless you. How scary! I never liked it when oxygen was needed, but I’m really not liking it when oxygen is needed now.
sarah recently posted..So sick
Nope, not your blog Tammy! ONE of things that keeps me coming back to read is that you are SO honest about you and sweet baby boy Parker. Having a family is tough – figuring out how to get that picture to flip is tougher…
While I am not in the same situation, SOMEONE out there is, and your honesty could be, and probably is helping them get thru the day. It’s nice to know that regardless of the circumstances, there is someone who understands…I think Parker is amazing – he really is a Little Hero!
Twitter: therextras
Mar 17, 11
Like amy said “SOMEONE is out there” is in the same situation. Meaning to me, other children are being misdiagnosed as not having aspiration. *mychesthurting* at the thought.
What.to.do?! If Parker’s physicians would at least acknowledge this perhaps the word would spread among physicians. No?
Hugs.
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