Pictures will soon follow. Tonight I just wanted to give an update on Wes' recent trip to Shands. Dr. Collins is looking at sinus surgery for Wes as a last resort at this point. He had a swallow study, which again shows a beautiful swallow and him protecting his airway like a champ for the first portion of the swallow study. He had a thin liquid, then pudding consistency, next barium cracker sandwich, and last he washed it down with thin liquid. The last step revealed an issue. nasopharyngeal (np) reflux. Basically the liquid he was drinking washed up into his nose around the back of his soft palate. The soft palate should met the back of throat closing off air and food from his nose. It looks as if his soft palate is not meeting the back of his throat, because it is not long enough or it is not moving properly. Both issues that some children face with cleft palate and requires surgical repair.
The speech pathologist did not see any aspiration. After I left my mind began to race, so I called back and discussed the possibility of Wes aspirating as he is trying to coordinate breathing and swallowing during these episodes of np reflux. Many times I have seen liquid coming from Wes' nose and him taking these quick mini swallows and trying to catch his breathe. The problem with catching an episode of aspiration like this is the length of time a child is exposed to radiation from the videofloroscopy. She agrees this is a very reasonable explanation for his aspiration.
Otherwise Wes trip was again left us with no answers or plan. Dr. Collins wants Wes to be seen by a GI doctor. Wes was diagnosed with reflux as an infant, but this has not been an issue and appears to have resolved. Today I emailed questions and faxed the swallow study report to Dr. Vicari, who repaired his palate to get his opinion on the next step for Wes.
Tonight was Wes first growth hormone shot. The thought of this night has been weighing heavy on my heart for sometime now. I stood there with the needle in my hand, my heart in stomach, and my breath held. Wes was asleep, but quickly woke up screaming. Poor little guy, hate to think of this nightly routine. Anyone who wants to know how big the needle is or at any point refers to it as a little needle, just remember it is big enough to be a NEEDLE.