Piper went back to her doctor on Monday to get an “all clear” to go back to school.
I’m SO GLAD that she’s feeling better. She’s got that “it’s so good to feel good” buzz going on, which as exhausting as it is to watch, makes me so glad (and thankful!) that she’s back. She gets tired, easily, and doesn’t have much endurance. She used to be able to endlessly walk (or run…) and she’s just not there yet. She’s skinny, and weak, but she’s healthy and happy (really, I think “giddy” is probably more accurate.) I didn’t realize how much I missed her ornery little grins! She’s allowed to go to school for a couple hours a day for a while until she gets stronger.
The doctor said that she still has some junk in her lungs, which is to be expected and will likely take quite a while to fully clear. And I learned something- the reason kids with Ds have trouble with lower respiratory infections, oxygenation, etc., is because they have fewer alveoli than their typical peers. So, when she got sick, it likely affected the same number of alveoli as it would anyone else, but that same number was a higher percentage of what she actually had. Interesting, huh? Anyway, that bit of residual liquid in her lungs will make it extremely difficult for her to fight a secondary virus, so we’re hoping (and praying!) that she can fight anything that she’s exposed to at school.
The doctor said she really thinks Piper got so sick this time because it was “a perfect storm.” She had never recovered from her tonsillectomy, adding in school, and the germs, and it all just hit. The Monday we took her in, before she was admitted, she weighed between two and three pounds less than she did six weeks prior. And a 23 pound almost 3 1/2 year old doesn’t have much reserve to fight with.
She’s back to her 24 1/2 pound self that she was before she got sick, so we’ll take that. (School, I think, makes it tough on her- she burns calories like nobody’s business, and even though they snack, which, apparently, she loves, she’s working HARD!)
They did, though, want to be sure that this fluke incident wasn’t because of aspiration. Two theories were presented- that, either she has always aspirated but she’s always been able to fight it (silent aspiration is a huge issue, particularly in kiddos with Ds), or, more likely, that the tonsillectomy changed her structures in such a way that she was having a hard time learning how to swallow again. The antibiotic that ended up helping her isn’t typically used to treat aspiration pneumonia, and she’s never really choked, and she’s NEVER gotten a lower respiratory infection before, so, it seemed, the likelihood of aspiration was pretty low. But, before she got sick like this again, we decided to rule it out.
The swallow disorder clinic called on Wednesday with an appointment on Friday for a study (this, surely, is a record somewhere, right???)
So, today, we went back down to Children’s for the work-up. Because of how traumatized she was while she was inpatient, Piper did surprisingly well talking with the ST and OT who were conducting it. She was more than willing to go into their conference room for a chat before the procedure started. But, man alive, as soon as we walked in to the radiology room, and she saw the lead gowns, she flipped. She was ready to leave, thankyouverymuch, even if we did have chocolate pudding.
It took some serious coaxing to get her into the chair, and finally got her to take a bite of angel food (dipped in barium.) And then she took a bite of pudding. And then a HUGE bite of pudding (they were remarking on her ability to clean half a cup of pudding in a single bite- yes, it was really that impressive…) So we were all ready for her to take a quick gulp of juice, her favorite juice, and we’d be done. She refused. Downright, absolutely, positively refused. Took about 15 minutes for her to take a single, little, sip. And then she discovered what it was- and gulped. And gulped. And gulped. Took about five ounces of stuff in a matter of seconds.
And that was that.
Moral of the story is that she is NOT aspirating, at all, and that, because of her majorly large bite of pudding and major, consecutive, gulps of juice, they can all but guarantee that she does NOT aspirate in any form.
So, hopefully that’ll end our little journey on this road.
I sure hope so; she’s already been threatened with grounded-until-your-30 if she needs another surgery. I’m starting to think we should amend that to grounded-until-your-30 if you’re ever back in the hospital. Surely that’ll work, right???
So glad you got the all clear on the swallow study. Thickening liquids is a pain!
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