A Step Backward. Or Sideways.

On Friday morning I took Stellan for his second barium swallow study, in which he drinks white goo (barium) of varying densities while being recorded on a video x-ray to see whether he’s aspirating, having some or all of his food go down his windpipe and possibly his lungs. Basically, aspirating = bad. It can lead to choking (but doesn’t always) and can also cause pneumonia, and nobody wants that.

His first study was done in late September, just a month after we’d learned about Stellan’s brain and were starting to understand all of the other complications that go along with it. Among them, swallowing difficulty due to his lack of coordination.

In the eight months since, Stellan has given up entirely on the bottle (eventually leading to the G-Tube) but has taken more interest in eating from a spoon and a great interest in drinking from cups. And in the past few weeks in particular, he seemed to be far more coordinated, actually pushing food to the back of his mouth and down his throat (rather than straight back out his mouth and down his chin) and also seemingly able to drink thinner liquids because he rarely, if ever, choked. We thought we were on a roll.

The problem is that you can still aspirate without choking and, as I learned Friday morning, it turns out Stellan still is. Quite a lot.

We tested him on thin liquid (water or milk consistency) from a cup first and saw a lot of it go down the right pipe, but some down his windpipe. Then we tried solids, since he’s been eating more of those. Even with a puree like apple sauce, some was going down the wrong pipe. Only with very thick, yogurt consistency solids did everything go the right direction.

I’m really bummed. It was hard seeing it on the screen and knowing that I’d been unknowingly been causing him to aspirate by letting him drink some liquids here and there (which he LOVES to do, as long as it’s not from a baby bottle) and even purees, which I hadn’t even imagined could pose a problem. We’re very lucky he hasn’t gotten sick in the past few weeks. And I’m also bummed because I really thought he was making progress. But I was wrong. And it’s a total downer.

So back we go to super thick liquids and purees. At least he’s still showing an interest in eating and drinking, and with any luck it will continue. And hopefully with some time and practice and lots of patience his ability to swallow will improve.

Comments

Maite
Reply

Yes it is a set back and is a bummer, but sometimes there is the need to have a step back to go forward even faster, Hold on! and keep going he will get better very soon :)

Denise
Reply

What a struggle for all of you guys! But do not blame yourself for it. You have shown already so much patience and strength. You give him so much love and care, and that is why he shines and flirts is who he is. My thoughts are with you and motherhood gives you magical skills. Love, Denise

Evan
Reply

I know it’s a difficult problem, but soft solids will continue to be a great option–especially as he gets more if those amazingly cute tiny teeth. In one man’ very humble opinion, brownies, chicken fingers, French fries… How can a little man go wrong? Love you guys very much.

t'ai jamar
Reply

sideways indeed. thanks for sharing this– just keep it coming. write it down. watch your breath when you’re upset. hold him tight. kisses to both your beautiful boys. (big hug)

Annie
Reply

Bugger! I love you. Please don’t for one second think about any accidental aspiration. He didn’t get sick and you guys are on it with the follow up b/c you are amazing. It stinks big time, period. Especially since he loves the yummy juices, but you’ll find alternatives! He is making strides in so many other ways! “Dog” day, using his hands, head, his talking skills emulate yours! ;) HUGE hugs from afar, please think of this as sideways not backwards. And again, I love u and of course Stelly belly! Yup, I did it, passing down the Noellie belly to Stelly! Xo

Wendy
Reply

hang in there chica. lots of good vibes for you and stellan.

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