With the rash epidemic under control and healing, we had a visit to Seattle Children’s Hospital, previously delayed, last Monday. It was a video fluoroscopy exam to see if she has any swallowing dysfunction. First, thankfully they have a great sibling playroom at the hospital, Ewan was able to go somewhere fun while we did our exam. They take River to Radiology. River gets to sit in a fun little chair where we will feed her things as the x-ray takes videos. River was pretty cooperative when it came to trying different foods that were filled with barium. She especially enjoyed the nacho cheese Doritos with a barium paste. When it came to trying the different fluids it got trickier. River needed to drink things with varying viscosity, a few drinks she was willing to take sips from, but we couldn’t get her to do seconds on anything.
According to the test River did show signs of dysphagia, which just means swallowing dysfunction. It appeared ONLY with the thin fluids. She did not actually aspirate or anything go down her airway. But they did say that there was signs that it starts to go into the airway(at the top) and then continue down the esophagus. She cleared out all remaining food/fluid in her esophagus. It was called “deep penetration” with a small risk of aspiration. But considering that River is not getting colds or pneumonia left and right it’s likely she doesn’t aspirate. The important thing we can get out of this is trying to find ways to get her to increase her volume of fluids. She was prescribed a thickener to her fluids. They want her on half-nectar solution, and we are using the brand Simply Thick. It makes her drinks close to a syrup consistency. That she has dysphagia is possibly a source for her self-limiting of drinks. She might be able to feel some level of discomfort when swallowing thin liquids and this could be the reason she only drinks small amounts in a day.
I am astonished by this diagnosis mainly because I think this should have been discovered like YEARS ago. I’m angry, but not sure at who. Maybe at myself for not pushing this test sooner. Maybe at all of her GI team for never ordering the test before. Maybe at the feeding therapist for not suggesting it. I, myself, didn’t think she had swallowing problems so I never pushed it. So, no one to blame really. Just everyone. Better we know now and can do something about it. Since last week and trying out the Simply Thick, she doesn’t baulk at it, and she is willing to drink juices and milk with it, so far so good. This will really help at the feeding clinic, knowing this information. Maybe it’s the reason we’ve been tubing her liquids since last winter.
T-Minus 6 Days until feeding clinic!