Swallow Study

We left early this morning to take Joshua to Atlanta for his swallow study. When he would drink a bottle of regular formula, he would often choke and gag and it would take forever to get him to drink 4 oz. I had read (and heard) from multiple sources that it shouldn't take more than 30 mins. to finish a bottle. Also, since Joshua had a heart defect (and surgery), it would not be in his best interest to be taking over an hour to finish a bottle. As the speech therapist said again today, drinking a bottle may not look like work, but for him it is like running a marathon.

We went to radiology and they had him sit in a little bucket type seat, and tied what looked like a sheet around him. On the left of him was a large metal plate, and they pulled another metal plate to the right of him, so he was boxed in. I stood in front of him and first fed him some barium the consistency of regular formula while they watch a x-ray video of him swallowing. It was interesting because the barium showed up black on the x-ray so you could really see where it was going. The speech therapist made a couple of faces and said that he had some "deep pens" on swallowing. This stands for deep penetrations, which means that when he swallows, some of it goes way down into his airway, hitting or almost hitting his voice box and then bounces back out and finally goes down his esophagus. You can imagine that that would cause some gagging and choking!

Even though he didn't aspirate while the test was being done, the speech therapist said she believes he does do it sometimes, especially when he is more tired. She then gave him a small amount of thickened barium. She could tell that although he took fewer sips, he took more into his mouth this time and it also did not go "down the wrong way". She sent us home with a couple starter kits of a thickener called Simply Thick and told us we should order some today so that it will arrive by the time we run out of our starter kits. Simply Thick is a gel made from xanthan gum, a thickener used in lots of foods. For instance, it was an ingredient in my sunflower seed packet that came with my salad at Chick-Fil-A (who knew)! It has no taste and adds no calories. I make up a bottle of regular formula, then squeeze the right amount of the gel into the bottle and shake it all up. It looks like runny yogurt, or a yogurt smoothie. So far, he seems to be taking to it well. Thankfully, I had a large number of different types of bottles at home in my attempt to find one that would stop the gagging, so we found one that works.

We are going to see if insurance will cover the cost of the thickener since it was medically necessary, as well as not cheap! The speech therapist said to keep him on it for 8 or so weeks, then we can try to experiment and see how he does with regular formula. She suggested that we come back in 8-12 weeks for a follow up study, but we don't know if we'll do that. If we feel he needs it, we will, but it is a long trip and really wears us out by the end of the day!

I sort of wish I had taken photos of him at the swallow study, but then I feel weird snapping photos in all sorts of odd locations! :)