Tweaking

Paxton had another follow up visit with his nurse today. When she saw him, she had an immediate concern regarding his fluid retention. She noticed evidence of swelling on the side of his face that he was most recently laying down on. This was called dependent edema, which was an accumulation of fluid underneath the skin that caused the appearance of swelling. Usually, the areas where the fluid gathered the most was in the places where gravity was the pulling the strongest. The other concern that the nurse had was that he had lost weight since the last time he was weighed. She was worried that his heart might be working too hard, which was causing him to burn too many calories. She encouraged Susanne to contact his pediatrician and cardiologist for advice.

She got in touch with his pediatrician first. She was able to advise Susanne on how much to increase Paxton's feedings by to increase his daily caloric intake. She wasn't comfortable with adjusting the medications without the approval from the cardiologist. Luckily, Susanne was able to get in touch with her before the end of the day. She decided to switch Paxton's diuretic dose from 7mg once daily to 4mg twice daily. It wasn't much of an increase, but hopefully it would make a difference.

Susanne knew that it was a fine line between how much fluid his body required to grow and how much his heart could handle. She was given the clinical signs to look for if Paxton wasn't responding well to the changes.

Later, Paxton had a therapy appointment. They worked on oral feedings with the variety of foods that he was already familiar with. Currently his menu consisted of a sweet potato puree, butternut squash puree, apple puree, and banana puree. Paxton started to seem less interested in the food at each session, but he still managed to get it down. He almost seemed aggravated today with the whole concept. He was still only being offered a minute amount in each spoonful. It would take him more than just a few minutes to figure out what to do with it all and swallow it down. Most of the time, Susanne would think that he was finished with the food in his mouth ready for the next bite, but then he would spit some out of his mouth. He was like a little chipmunk that would store his food in his cheek pouch until he was ready for it. Susanne was only able to get around 10 to 15 tiny spoonfuls in before his hour session was over each time. They didn't want to push him much more than that. Susanne was excited because she walked away with a new trick today. She was shown how to flip the spoon over when giving him his food so that his tongue would taste the food first instead of it sitting on his upper gums while he got the courage to move his tongue forward to try it. Hopefully this would contribute to future oral feeding success!