Something Ain't Right

Paxton got up today around 8:00am which was pretty typical for him. His usual pattern was to wake up for a short time between 6:00am - 9:00am for about an hour and then go back down for a nap. Today, he went back down, but he woke up within an hour from when he shut his eyes. He continued this pattern all day. Susanne had noticed that he was holding his head and neck extremely still. It almost appeared as if he had a stiff neck. He seemed to track his toys just fine and he appeared to have full range of motion. Susanne noticed that he seemed less active, however, which had been somewhat apparent starting on Tuesday. She also thought that the area under both eyes looked more swollen than they had been. She was wondering if something was wrong. He didn't feel febrile or look pale. Even though she couldn't put her finger on it, she was definitely going to keep a close eye on him.

Susanne worked with Paxton on tummy time. He just laid there the entire time. Susanne lightly grasped his head to help support it in extension. He immediately started wailing. He had never had that response before. She decided to take it easy on him for the rest of the day.

He didn't nap well at all. The most he would sleep was an hour before he would start crying. Susanne could not figure out what he was so upset about.

The therapist came over in the afternoon to work on feeding. Susanne had a buffet of food to offer Paxton. Susanne had mentioned to the therapist that over the last two days, Paxton had been gagging and vomiting after about three spoonfuls of food. He would get really worked up. He would start sweating and breathing rapidly. Luckily, as they started this session Paxton handled the little bits of food well. It wasn't until the very end of the session that he lost it. The therapist got to witness the change in his progress. She also commented on his quieter nature and the puffiness under his eyes. Susanne now knew that she wasn't making anything up. The therapist was also concerned. She had given Susanne some advice to see if those changes would improve his status. She wanted Susanne to consult with the nurse that was stopping by tomorrow to see if there was anything that she would suggest. If Paxton did not take a turn for the better within the next 24 hours, she would put in a call to the cardiologist.

Paxton took forever to get settled for the night. Right when Susanne thought he was down for the night, he woke up. Susanne tried to rock him and cuddle him, but that did not work. She did hear his stomach gurgle so she decided to vent his G-tube in case he had gas buildup. She did get a lot of gas to escape through the syringe, but he still seemed irritable. He would cry if she laid him down. He would cry if she picked him up. The only thing that calmed him was when she would sing. Susanne decided that she was going to add in Tylenol to his evening medication regimen. After an hour he was sawing logs. Susanne hoped that he could sleep peacefully for the rest of the night.