swallow study yee haw

barium breakfast
a side of radiation
and a wake-up call

Yesterday, Ike-a-saurus had a nice breakfast of barium for his swallow study. He had to fast for four hours before, so when I wrassled his slobbery fingers out of his mouth and popped in a bottle of green apple (wtf?) flavored barium, he was like, "Best breakfast EVEH."

You know how when you go in to the doctor, or you go in for some kind of medical test, and you tell them all about your ailment, going on and on, and then the doctor finds nothing wrong with you? The tests come back normal, or can't reproduce the problem? Well that did not happen with the swallow study, no sirree.

Good ol' Ike-a-saurus put on the full show.

He guzzled, aspirated a little, got tired fast, sucked wonky and then performed an admirable imitation of Mount Vesuvius. Out came the barium from his mouth, his nose, possibly even his ears. The look on the radiologist's face was priceless as he saw the mess all over the seat and the machine.

And I would like to point out, when a baby does that – spews forth like the Bellagio fountains – everyone in the room – doctor, speech therapist, radiologist, mom, dad – everyone goes, "WHOA!" and stands there, frozen momentarily.

We learned a lot from the swallow study. Obviously, his reflux is not under control. And we weren't even there to test for reflux. He is indeed aspirating when he eats, but only trace amounts. This is cumulative, though, and can settle in his lungs causing increased secretions and possibly pneumonia one day. He aspirated when he drank, but is actually at more of a risk from aspirating with the reflux, because it's so forceful.

So now we have a vat of slime to feed him (thanks, Christina!). We mix it with his bottle to thicken the milk to a "nectar" consistency. This is supposed to help prevent him from aspirating, with the added benefit of maybe helping with the reflux. We have instructions on how to feed him (sitting up, in quick burst intervals so he gets less tired), what to do when he's done (keep him upright for 45 minutes), etc.

We are pretty much forbidden from breastfeeding now, because my milk is obviously not thickened and it's easier to aspirate thin liquids. It could be dangerous for him. Really dangerous. However, if I pump first, keep an eye out for letdown, and keep him upright-ish, he can nurse for comfort. As soon as I feel like he's getting much milk, though, I'm supposed to pop him off. I really want to keep doing this, even if it seems crazy. The trach is the only reason he's aspirating, we think, so when the trach is out he can nurse again for real. I don't want him to forget how.

(I would like to note here that when he was exclusively breastfeeding, he never did the Vesuvius thing. He did it with bottles, but not with me. He was probably silently refluxing, though, so I should let that rest. Well, not probably, we know he was. The ENT saw evidence of it before the trach, before any of this.)

So. So. So. The study was a spectacular success, in that we saw everything we needed to. Now maybe we can help him eat more successfully. However, because of the impressive reflux, we have to take him for a GI study. If that study shows any physical problems, or anything weird, or shows that the reflux is just too severe, we'll have to do the G-tube.

He did so great yesterday, still smiling even though he was hungry, only vaguely grouchy when he had regurgitated barium smeared from one end of him to the other….  He was just hanging out, all, "What's up you guys? You would barf chalk, too, don't even front."

Yesterday was not easy, though. It was actually quite frantic, and the household was filled with gruffness and yelling and hurt feelings and miscommunication. We were tired and stressed out and not happy with science experiment feedings. Not a great day. But through it all, Ike was happy. And today, with a little bit of sleep and some Simply Thick slime, we are all in a better place (side note – doesn't Simply Thick sound like an Alan Thicke album of the early 80s?).

I wish I could say the calmer feeling is permanent, but I'll certainly take what I can get.

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6 thoughts on “swallow study yee haw

  1. Go Ike for being such a show off! Now you have answers, and a plan (and you can still nurse, even if only for a moment). 🙂 I know the road ahead is still rough and rocky and there are unseen dangers around the bend. But we’re all here for you and your fam. listening, and supporting, and giving virtual hugs!

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  2. Well, answers are good. Hopefully the ‘nectar’ will do the trick so that a g-tube isn’t in Ike’s future. (I’m slow-going this morning, but I imagine there is a joke in there somewhere involving g-love and special sauce)
    You know, the thing I’ve found the very hardest about raising a child with special needs is that his day affects the rest of the family’s day. The stress just permeates to each and every one of us. Recognizing that fact helps sometimes. If I’m more aware of it happening, I can try to nip it in the bud. Good luck, Kari.

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  3. Just wanted to say that my 3 and a half year old has a non reflux related GI disease that caused her to be failure to thrive by four months. She nursed for the first five days then spent the next two weeks sedated and the next four being heavily monitored as far as food was concerned. Throughout that time we diligently finger fed her and when we finally got the go ahead to nurse again she latched like a pro.
    We thought it was awesome until the weight loss started and our chance to nurse was threatened again. After messing about with suggestions from the doctor that essentially amounted to force feeding we asked the surgeon for a g-tube. The procedure was fast with a recovery of less than 24 hours and no more messing about with gross tasting formulas. Finny continued to nurse until after her second birthday with supplementary feeds through the tube. At three and a half she carries her pump backpack like a little trooper.
    For us the tube has allowed her to carry one despite her challenges in a way no other option would.
    Throughout all of our interactions with doctors and other medical staff my husband and I have always tried to remember the things we thing are most important for our kids (nursing for nutrition and comfort, quality of life, love and acceptance from family, especially from siblings and an openness to each of them and their differences). These values led us to fight for a return to nursing, whole family sleepovers at the hospital, and a lot of advocacy on Finny’s behalf. We try with every decision to think ‘what does that look like for her when she’s 5, 10, 20, 30 years old?’. Sometimes I think that can get lost in the day to day of dealing with doctors. They tend to only consider the immediate repercussions, as parents we need to look into our children’s future in order to make the right decisions for them.
    Good luck to you and baby Ike. I truly believe that some people are better at coping with these kinds of challenges and form the humor you still seem to be able to muster I’d say he’s in wonderful hands.

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  4. Knowing is half the battle. Glad you know more about what’s going on with Ike and his eating. Just know that you and your family are in my thoughts and prayers.

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