We did a lot of waiting, and Sadie was so good. I was really proud of her. I scheduled it first thing in the morning because I figured it'd be easier to not feed her if she was sleeping! So, I didn't even wake her up, I just pulled her out of bed and put her in the car. We worried about getting dressed and stuff once we got there and checked in! (we had plenty of time)
All dressed up and ready to wait!
By the time they started the test, she had been awake for an hour and a half, and was plenty hungry. That just made the test go better.
Getting all set to swallow some barium!
I wasn't able to participate because I'm pregnant and it's all done with X-Ray, so I stood behind a wall and watched through a window. The cool part about doing that was that there was a computer monitor right in front of me with clear video of her swallowing. Last time we did this, I was feeding her and didn't get to see the video at all as it was behind me, so I was pretty excited about this.
My view from behind the prego wall.
They started with honey-thickness liquid. Sadie swallowed that perfectly.
Then they tried nectar-thickness liquid (which is a little thinner) and the first 2 or 3 swallows went down just fine, but by the third or fourth she had silently aspirated a tiny bit. Mind you, what I was told was that it went down just fine, then at the very end she aspirated, so it was likely from fatigue.
They knew they couldn't go any thinner, so they did the pudding consistency, which is basically like giving her a puree with a spoon. She also aspirated a little bit of this. Again, because her muscles were probably fatigued.
I took a picture of the computer monitor showing the test. It's kind of hard to tell what you're looking at, but that little black line I'm pointing to is the liquid she's swallowing. (I was told I couldn't take video of the monitor, but I should have anyway!!)
Finally, they tried giving her a cookie. She struggled with the cookie. I think it was just a little bit more dense than those puffs we give her and she doesn't quite get yet the whole chewing thing. I mean, she can do it if it's on accident, but I don't think she understands moving the food to her teeth for the purpose of chewing. They ended up having to give her a little liquid to help her swallow, and when that wasn't entirely successful, they swabbed her mouth with a cold lemon swab to encourage saliva and swallowing. Then she finally got it down.
So, what does all this mean? Nothing. It basically means we're right where we were a year ago. I don't know if that's good or bad, but I was hoping at least for some progress. I want Sadie to be independent of this tube someday, but she has to get better at swallowing first...a lot better!
The lady who did the test told me that if she were looking just at these test results she'd tell me that it's not safe to give Sadie any food by mouth. (sad) But looking at the whole child and the situation, knowing that we give her LOTS of food by mouth, she said she'd recommend doing just what we're doing. Professionally, she recommended giving 4 or 5 bites multiple times a day, and starting with tiny 1mL amounts of honey-thickness liquids multiple times a day. After all, she can't get better without any practice.
She also mentioned that it's a big deal that Sadie's really never been sick, and that she's never had pneumonia. She said some kids just have strong lungs, and some kids aspirate once and they're in the hospital. I guess we just got lucky on that one!
So that's that. Not really that exciting, but at least we know. She didn't recommend another swallow study for probably a year because based on Sadie's lack of progress in this last year, she doesn't anticipate fast progress really over the next. (sad again)
Practice practice practice Sadie!!