Ironically, this is Feeding Tube Awareness Week! A swallow study is often performed in conjunction with an assessment for a gastrostomy tube (g-tube). This was Jennah’s first swallow study since 2008. It was nice to see the same speech pathologist that worked with us nearly 5 years ago. I recall Jennah was seated in her infant carrier back then and had several seizures during the study. She choked, screamed, and spat up. In the months following that first swallow study, she would regress from the seizures and lose her ability to suck and swallow. She eventually fell off her trajectory on the growth chart and was dehydrated and malnourished. At the time, we felt that we were “giving in” to the g-tube. Now we realize that it has not only given her (and us!) a better quality of life, but it has saved her life.
As I wrote in my last entry, Jennah has been making great strides. One of her accomplishments has been the visual cue of lip-smacking (for you seizure-savvy folks, we’ve confirmed that this is not a seizure ) when she has dry mouth and she is maintaining her secretions (drool) quite well. She also seems interested in the smells (although sometimes adverse when it comes to Thai food!) of food. Of course, we strive to give her everything she desires and to enjoy all of the great things life has to offer, such as the taste of really yummy food!
Cue: swallow study! We are now in a place where we can consider working on Jennah’s oral motor skills. She will never eat full meals by mouth and we have no intention of removing the g-tube. We have accepted the wonders of the g-tube. We love the g-tube. We embrace the g-tube. Celebrate the g-tube! OK, you get the point. We do want to let her enjoy the taste of food and perhaps do an even better job with her secretions. What’s more is the possibility of increased vocalization! Jennah has the cutest, sweetest voice … we want to hear it more! Of course, there may be times that we won’t want to hear it, let alone teaching her to use “inside voice”, but we’ll tackle that if we ever get to that point. One day, one skill, at a time.
What is a swallow study? It’s known as a video-fluoroscopic swallow study (VFSS) or modified barium swallow study (MBSS), and they make her swallow a bunch of barium (makes chalky poop) and video x-rays are taken during the act of swallowing. The mechanics of swallowing are crazy complex and amazing. I’m not going to go into the whole science of it, but they basically make sure that the liquids/food goes down the esophagus and that her muscles are able to close and block off the trachea quick enough to protect against aspiration. We mixed barium into some strawberry yogurt and she swallowed it like a pro. We then put barium into water, but gave it to her only a few drops at a time from her bottle. Again, not much of a problem, although delayed. The water was room temperature and she couldn’t “feel” it in her mouth. Next, we gave her the barium from her cut-out cup. This would be the “challenge” test. I gave her more than usual and she managed it pretty well! There was the slightest bit of a “leak” into the epiglottis, but she was able to repeatedly clear it out. Yay, Jennah!
So we now have the green light to begin oral motor therapy and to feed her by mouth as tolerated and accepted. I’m going to share some sweetened condensed milk with her. Jennah is glowing … not just with pride, but with the massive amount of radiation she’s gotten from so many x-rays! Between CT scans (no radiation with MRIs) swallow studies, gastro-anatomical studies, 10+ hip x-rays, upcoming spinal x-ray … I digress and know the amazing body recovers, but you gotta wonder …