Well I'd have to say that this was by far one of the neatest test Carson has done. We went to radiology where we were to meet the speech pathologist and the OT. We were told to be there at 12:30 and the test would start at 1:00PM sharp. So at 1:35 they finally called our name. Apparently we were waiting on the doctor. So they put Carson in a chair and put barium on everything. This is how they saw it on the X-rays. We started out with liquids that were room temp and then liquids that were cold. She wanted to see him swallow foods and liquids with different textures. Then we moved on to applesauce. After that was goldfish crackers. The last one we tried were grapes but Carson was way to smart and decided he didn't want to play the game anymore. Charlie took a bite of a cracker with the barium on it and said he didn't blame Carson for not wanting to eat any of it. I personally didn't try it but I guess it taste a little like chalk?
Anyways, the neat part was everything was done through the X-ray. So everything he ate and chewed you could see on the monitor and watch him swallow the liquids and foods and where it went. For the most part, he swallowed the way he should which was everything going down the esophagus. But in the 10 minutes of this, he swallowed wrong 10+ times. The speech pathologist was a little concerned with this. She basically said that when Carson eats, he has a delayed reaction and his epiglottis doesn't shut down quick enough, therefore causing some of the liquid to go down in his airway. She calls him a silent aspirator. She is concerned because she said he has likely gotten so used to this that he doesn't even try to cough it back up, which would lead the liquid/food to go straight down to the lungs. She thinks this is a contributor to Carson having so many colds, respiratory related illnesses, and asthma flare ups.
So the GREAT news is, this may be the answer to all of our problems. Until his body learns to react quicker, we have to put a thickener in all of his liquids. It is called Simply Thick. Has anyone ever had to use it? It is a tasteless gel that is the consistency of honey and we add it to all of his liquids. Charlie and I tasted it and it's just a weird texture to swallow. If he has soup, we will drain the broth and either have him eat the noodles or put the simply thick in his broth to thicken it and mix the soup back together. It is going to take some time to adjust to this new routine.
The OT told me that until further notice, Carson cannot eat foods that are real juicy (oranges, pickles, cherry tomatoes, watermelon). Also, no ice cream, jello, Popsicles. Another big problem I will encounter, he cannot drink after me. He always has to drink out of my drink because it's the big boy thing to do.
Now for the kicker, insurance won't pay for it because it isn't a prescription and the cheapest I have found is a 21 day supply for 65.00. This includes the shipping and sales tax. If anyone uses this and knows where to find it cheaper, please let me know. Right now I have found it is cheaper through the website than the home health supply companies. Regular pharmacies like CVS and Walgreens do not carry it. Anyways, the good news, maybe this is why we are always sick. Pulmonary will make the final decision if this the the ultimate problem or not but after tests and lots of doctor appointments over the last 4 months, this gives me a little peace of mind.
Burrito Boyz, Toronto, ON (Adelaide W)
12 hours ago