Stetsyn had a swallow study (videofluroscopic swallow study- VFSS) on December 31st, 2024 at Riley and it went great!
The reason for this study is because of Stetsyn’s frequent vomiting and gagging causing vomiting. This is a big concern for her since she is already small, and is continuing to struggle to gain weight since she is unable to take in proper nutrition. I also worry about her ability to benefit from her medications when she throws up some, most, or what seems like all of her bottle within an hour or so after taking it.
This study was done with an x-ray tech and a Speech Language Pathologist (SLP). I was told to bring Stetsyn hungry, so they suggested not feeding her for about 4 hours before. This actually worked out pretty well, because she had Physical Therapy at 11:30-12:30, and her swallow study was at 3. This gave her more than enough time from her bottle before PT to the swallow study. I was told to bring her favorite foods, drink, bottle/nipple/cup, spoon, and whatever would give the best chances of her taking her food/drink during the study.
During the study, the SLP mixed the Barium contrast in with a small amount of pureed apples I brought for Stetsyn to eat while the x-ray tech put lead aprons on Cody and I, and we got Stetsyn situated in a high chair next to the x-ray machine. I sat in front of Stetsyn and fed her the apples with contrast while the SLP watched the images on the monitor. Cody stood next to me with Stetsyn’s iPad playing Bluey to help keep her attention. It was important that she looked forward for as long as possible to get the best views for the study.
While she was a bit hesitant with the mostly-Barium-apples, she did not seem to have much of a problem with the flavor (no yucky or disgusted expressions) she was more unsure of it. I was worried she may make an awful face and not take any of the contrast or vomit the contrast and not be able to complete the study. Fortunately, my worries were quashed, she did great! After several bites of the apples, she got to take a bottle with her Carnation Instant Breakfast combined with the contrast. She didn’t seem to even notice the contrast and sucked that bottle down happily!
Cody got to watch the monitors next to us and said it was pretty cool to watch. After the SLP had enough images, she brought them up on the monitors next to us. She showed us the videos and stills of Stetsyn’s study. Cody was right, the x-rays were fascinating to see!
I found an image, shown below, from the American Speech-Language-Hearing Association (ASHA) showing the anatomy we viewed in the scans (link to webpage and original photo).
Thankfully, the Speech-Language Pathologist reported no observations of aspiration with the apples or Carnation! This means all contents went down her esophagus as they should and none in her trachea (airway).
While there were no aspirations, there were a handful of what they call “penetrations” or instances when contents began to go towards the trachea, in the area of what is listed above as the epiglottis and vocal folds. However, the SLP described the penetrations as “infrequent” and informed us she had no further concerns around the findings! She explained that as the rest of the contents would go down her esophagus, the little bit causing the penetration would follow the rest down the esophagus.
The SLP said there were of course things she would not be able to see or determine from the study performed, but that in her opinion there were no issues observed and that we shouldn’t have any reason to believe that Stetsyn’s vomiting are a result of a swallowing issue.
Of course, I thought of a question when we got in the car (go figure). I wondered if this could be the cause of some of the gagging Stetsyn has experienced because of the penetrations. Cody and I talked it over and we came to the conclusion that since the contents were not actually going into the trachea, she wouldn’t need to clear her airway through coughing, and by the time it is that far it wouldn’t cause gagging. So that’s our explanation/theory, who knows if or when I will remember to ask someone about that question.
Of course this was on New Year’s Eve, and since I knew she had PT and the swallow study, I wasn’t sure how she would be/feel by the time the evening rolled around. Stetsyn is pretty unpredictable when it comes to how she will feel and act in the future 12 hours, and it can change multiple times.
I was hoping she would sleep on the way home so that she could be rested to go to a friend’s house for a NYE party, but she fought sleep the whole way home and fought a nap when I got her home and in bed. We got home around 5, so there really wasn’t time for us to make it to the party on time, and even arriving late was pushing it.
So, we spent a quiet night at home, Stetsyn watched Octonauts and I began working on a new craft project, loom knitting. It was nice to start a fresh project that I could also work on while hanging out with Stetsyn in bed, and she was happy to have my un-divided presence; she doesn’t care if I’m actively engaging with her, she just wants me to be within 2 feet of her as much as possible. She made it until 11:30pm and fell asleep, ringing in the new year comfy and sound asleep in her favorite place.
Thank you for reading this post! You can find this post and others about our Rett Syndrome journey in the Stetsyn Updates sub-category under the Blog tab. I am still learning my website, but I hope to get things figured out as I post and upload more soon.
Leave a Reply