It’s been a double bummer of a day for Adam.
Yesterday he had some excitement (not necessarily in a good way) with a small choking episode in the morning. Adam required some oxygen via a nasal cannula for a little while afterward. He was placed on a puree diet, which was really kind of creepy in that the food was frozen to look like carrots, green beans, etc. but with a complete mush consistency. Definitely not the most appetizing food, by any stretch of the imagination. Later in the day, Adam went for a CT scan to make sure he didn’t have a pulmonary embolism (blood clot in his lung). Thankfully there was no embolism, but they did see a little bit of pneumonia in the base of his lungs. He’s been started on an antibiotic to treat the pneumonia, a nebulizer to help thin his secretions and bring them up, and some chest PT. Adam’s chest x-ray looks better today so he’s seeing some benefit. The doctors decided to keep him on oxygen, though, to help his oxygen saturations.
Due to the choking episode, Speech and Swallow came this morning and evaluate his ability to swallow small icy slush balls and 1 swallow of applesauce. It took Adam four careful swallows to get the applesauce down, which was in no way a passing grade. In fact, he failed the swallow study pretty spectacularly. What does that mean? He earned an NG (nasogastric) tube in one nostril that goes to his stomach, and will have food delivered that way. The NG is uncomfortable, and Adam feels it in the back of his throat. We’re all hoping that he’s less aware of it tomorrow. Currently, his “food”, which is called high-protein nutrition with fiber!, is going continuously. It will eventually become a bolus schedule given at meal times to mimic more regular eating, although it’s a far cry from normal eating.
Adam’s pulmonary function tests (suck and blow tests) have gotten a little worse in the last day, so the doctors are watching that carefully. We’re hoping those will improve and not continue to get worse. He’s also having more trouble with his hands and making them do what he wants them to do. It’s now harder to operate the Kindle, which is unfortunate when he wakes up in the middle of the night and wants to read to distract himself.
So all in all, not Adam’s best day. His spirits have been low, but we’ve got wonderful friends visiting right now that are making him laugh, which is wonderful to see. Kathleen, Adam and I are all of a mind that this f*ing syndrome needs to cut him a serious break. We’re really hoping that will happen really soon now. Here’s hoping tomorrow will be a better day.