Swallow Study

Earlier this week W had his swallow study.  When I scheduled it I didn't realize it was a no school day so the whole crew came with us!  We couldn't find a parking spot at the Children's Hospital so we ended up parking the next hospital over and walking.  It wasn't too bad outside so they enjoyed the walk.

W was absolutely fine until we got to the room and he saw the tiny hospital gown--perhaps he had flashbacks to last week's ear tube surgery?  The gown was just to slip over his clothes so he didn't dribble barium on his clothes but he didn't care--that thing was NOT going on him.  A nurse helped me get Flailing Baby into the chair and strapped in and we draped the gown over him.  He finally calmed down when he realized they were getting him a drink and he was fine after that.  Unfortunately, he failed the swallow study :\  He had a penetration all the way to his vocal cords very quickly on nectar liquids (his current level of thickening) so we didn't even get to try thins *sigh*.  The speech therapist conducting the swallow study said to keep him on nectar until we hear from GI.

So when GI called, they said that when he took small swallows, he seemed to do fine on the video, that penetration was a big gulp so they want him to use a sippy cup or straw cup with a valve to limit how much liquid comes out at once.  Unfortunately, we have both and he will not drink out of either.  He's stubborn, too--when he decides he's not going to, he will just not drink for days.  So they recommended we got back to using the very thin straws he used to drink out of instead of the bigger ones he was finally agreeing to use :p  We will wait a few months and then do another swallow study and see if he's made any progress but she doesn't feel another round of NMES will be helpful since this last round didn't make much difference for him.  So we wait and continue to thicken.