A VFSS is a swallowing study of various thicknesses using barium to see how Taz swallows the various consistencies. He still has frank aspiration before the swallow of thin fluids, and he still aspirates nectar thick fluids. Today there were 3 bottles with three different consistencies of barium; thin, nectar, and honey thick. They like to get a couple swallows of one consistency and then move on to another, and so on and so forth. We have to take Taz in hungry or he won't drink anything. Even when we take him in hungry, he isn't the most cooperative patient.
We tried to start him on an open cup, he absolutely wanted to have nothing to do with it. He saw the 3 bottles of barium, and he just wanted to get going with those instead.
Taz absolutely hates switching between bottles. He starts to get into one bottle, and then they want to yank that one and give him another. He becomes very agitated and uncooperative after a certain amount of bottle switching. They don't want him to drink a ton of barium, so one of the tests has been almost impossible until today; they need to test fatigue in swallowing. For many patients with dysphagia, they tend to do an excellent job of swallowing in the beginning of drinking, but they can start to aspirate after drinking for awhile. Taz likes to drink 8-10 oz at a time, so we have needed to test his fatigue aspiration on honey thick fluids. Today we were able to get a couple isolated swallows after he drank a couple ounces of his Elecare. He was very upset about not being able to drink an entire 10 oz bottle of cherry-barium, so that was the best we could get.
Unfortunately, we are rapidly moving in the direction of an idiopathic diagnosis. The SLP and ENT have absolutely no clue why he is aspirating. He has had quite a number of swallow studies, he even had exploratory surgery and a filler applied. No one has any idea why he aspirates, and no one can tell us if he can/will grow out of this. We simply have no idea why he aspirates fluids, so there isn't a timeline for when he will stop.
The good news is that his aspiration isn't worsening, and we were able to see a couple swallows after he had been drinking for awhile. The techs were highly amused by Taz; he insisted upon playing with his belly button while performing the swallow study. He wouldn't calm during the test until I freed his belly from the confines of his outfit.
The next steps are a clinical evaluation of Taz by an SLP. We also need to do a repeat swallow study sometime in the future when we won't offer him anything other than an open cup. If he has the option to drink from a bottle, he prefers to do that. He could be refusing because on some level it he knows that he is aspirating, and it feels better to drink from a bottle? Or he could just refuse because he is 2, and 2 year olds like to be independent. During the VFSS he wouldn't drink anything if I handed it to him, I had to set it next to him so that he could pick it up himself. We will also look into a full evaluation to see how on track he is developmentally. Which will be challenging, because he is far ahead in some areas, and slightly behind (but still in the range of normal) in other areas. We spoke about feeding therapy, but because his aspiration is silent, and there isn't really a clear reason for his issues, it would be difficult to know if he is really being taught to swallow properly. It isn't realistic to do his feeding therapies with a VFSS, so feeding therapy isn't really an option right now.
The hardest part of today what the look on Taz's face when we entered the hospital. The look on his face spoke of a weariness and fear that a 2 year old simply shouldn't have. He knew exactly what to do during the swallow study, he knew how to get his arm band on as a patient. He is very much a professional patient at this point. There is a great deal of pride that he is so intelligent, and a larger amount of sadness that he knows these things at all.
To ease my maternal guilt, I bought him a balloon with superheroes on it. Tonight we are having GF burgers, and strawberry lemonade. I will focus on the next steps later. Right now, we just need to keep moving forward looking for possible answers. Maybe we won't find any, but I have to at least try.
We tried to start him on an open cup, he absolutely wanted to have nothing to do with it. He saw the 3 bottles of barium, and he just wanted to get going with those instead.
Taz absolutely hates switching between bottles. He starts to get into one bottle, and then they want to yank that one and give him another. He becomes very agitated and uncooperative after a certain amount of bottle switching. They don't want him to drink a ton of barium, so one of the tests has been almost impossible until today; they need to test fatigue in swallowing. For many patients with dysphagia, they tend to do an excellent job of swallowing in the beginning of drinking, but they can start to aspirate after drinking for awhile. Taz likes to drink 8-10 oz at a time, so we have needed to test his fatigue aspiration on honey thick fluids. Today we were able to get a couple isolated swallows after he drank a couple ounces of his Elecare. He was very upset about not being able to drink an entire 10 oz bottle of cherry-barium, so that was the best we could get.
Unfortunately, we are rapidly moving in the direction of an idiopathic diagnosis. The SLP and ENT have absolutely no clue why he is aspirating. He has had quite a number of swallow studies, he even had exploratory surgery and a filler applied. No one has any idea why he aspirates, and no one can tell us if he can/will grow out of this. We simply have no idea why he aspirates fluids, so there isn't a timeline for when he will stop.
The good news is that his aspiration isn't worsening, and we were able to see a couple swallows after he had been drinking for awhile. The techs were highly amused by Taz; he insisted upon playing with his belly button while performing the swallow study. He wouldn't calm during the test until I freed his belly from the confines of his outfit.
The next steps are a clinical evaluation of Taz by an SLP. We also need to do a repeat swallow study sometime in the future when we won't offer him anything other than an open cup. If he has the option to drink from a bottle, he prefers to do that. He could be refusing because on some level it he knows that he is aspirating, and it feels better to drink from a bottle? Or he could just refuse because he is 2, and 2 year olds like to be independent. During the VFSS he wouldn't drink anything if I handed it to him, I had to set it next to him so that he could pick it up himself. We will also look into a full evaluation to see how on track he is developmentally. Which will be challenging, because he is far ahead in some areas, and slightly behind (but still in the range of normal) in other areas. We spoke about feeding therapy, but because his aspiration is silent, and there isn't really a clear reason for his issues, it would be difficult to know if he is really being taught to swallow properly. It isn't realistic to do his feeding therapies with a VFSS, so feeding therapy isn't really an option right now.
The hardest part of today what the look on Taz's face when we entered the hospital. The look on his face spoke of a weariness and fear that a 2 year old simply shouldn't have. He knew exactly what to do during the swallow study, he knew how to get his arm band on as a patient. He is very much a professional patient at this point. There is a great deal of pride that he is so intelligent, and a larger amount of sadness that he knows these things at all.
To ease my maternal guilt, I bought him a balloon with superheroes on it. Tonight we are having GF burgers, and strawberry lemonade. I will focus on the next steps later. Right now, we just need to keep moving forward looking for possible answers. Maybe we won't find any, but I have to at least try.
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