Swallow Study

Tucker went for an outpatient Swallow Study yesterday. A swallow study can be performed for other reasons (I suppose) but Tucker has always gotten swallow studies to make sure that it is safe for him to swallow food and liquids without them aspirating into his lungs. As many of you know, Tucker's lung development was the Number One priority for most of his life, so aspirating was a Big Fear! He did not eat by mouth at all for months in the NICU, due to the fear that he was somehow aspirating food, which would get him sick and keep him from coming home. He had his first swallow study right before being discharged from the NICU at 8 1/2 months old, then he had another one at 15 months old. Both of these studies showed that he could swallow just fine, with no worry of aspiration. Of course, this does not mean that he actually DID swallow for us! We have been in a feeding battle with this child from day one, he has so many issues going on with the oral feeds. Since he got his trach out in November, his oral feeds have pretty much come to a halt. We heard from so many people that getting his trach out would make Tucker want to eat more, but in fact he has done the opposite. He can taste and smell the food better, and as much as he wants the food, he is just naturally very scared to let it in the back of his mouth and actually swallow it. Lately, his airway is irritated, so he is even more hesitant to swallow. He often gags and is very dramatic about not swallowing, even when Chris and I brush his teeth. So his Occupational and Speech therapists have really been wanting another swallow study, just to make sure he physically could swallow. When we went to the Mito Doc a few weeks ago, Tucker choked on some Cheetos crumbs, and Mom and I said "swallow Tucker, swallow," then he finally did. The doctor said that should NOT be happening, so we had to have a swallow study ASAP to make sure he was Okay. So I called the pediatrician, and they got us in at Our Lady of the Lake the next week. Gina and I took Tucker yesterday. He was holding his Fritos, which we told him he could have only AFTER he did his feeding work. He doesn't really eat them, he just licks each one of them until there is no salt left! Then he puts them in a neat little pile. People who know Tucker also know to NEVER take any food he offers you! He often licks all of the taste off, then tells you "open!" so that you will open your mouth and shove the nasty food in...pretty gross! So Tucker's OT Mrs. Terri met us at OLOL. He was so happy to see her. We went in and they explained what would happen. The procedure took place in an XRay room. They fed Tucker food with Barium in it, then they watch on the XRay to make sure the food goes down his esophagus and does not come back in his lungs. Tucker was very obedient, when Mrs. Terri told him to swallow, he really tried. The XRay tech kept saying "he is not swallowing, there is no food going down." If you looked closely, you could see that all the Barium was around his mouth, because he literally does not swallow. For months I had been feeding him applesauce and yogurt...he seems to eat, but 10-15 minutes into a feeding, the bowl is still full! It is very frustrating, and Tucker really does try hard. So anyways, the XRay tech was getting frustrated, so finally Mrs. Terri got Tucker to swallow some of the food. The Speech therapist in charge of the study said that Tucker is physically fine with swallowing, so we can resume regular feeding therapy. She was really concerned with Tucker's lack of oral motor coordination, especially because she knows we have had fantastic therapists working with him since his discharge over 3 years ago. She said that Tucker is just one of those kids you only meet once or twice during your career, who just makes you feel like you are racking your brain, using every technique you can throw at them, and nothing works.....then one day they will just click and start eating. I think that made the OT feel a very small bit better, but not much! So after Tucker's tonsil and adenoid removal this Thursday, along with his recovery, we will go back to serious feeding therapy. The speech therapist said that Tucker's entire world changed when his trach came out, and it makes perfect sense that his feeding would have stopped. He is also very aware of his irritated airway, she said he is a very smart kid who knows that something is going on that is affecting his breathing, and therefore his feeding. Tucker was very obedient during the whole procedure, and did what we all asked of him. Gina watched from behind a glass window so she wouldn't be exposed to the XRays (Mrs. Terri and I wore protective gowns), and she thought it was very odd to be looking at Tucker's skeleton:) She said he has a huge head, which is hilarious since he has been diagnosed with closed sutures and microcephaly (small head, even below the 3rd percentile for heads of other 3 year olds). As soon as we got in the car, I opened his Fritos as his prize, he was so happy!