Monday, June 29, 2009

Aidan at NIH

Aidan’s Medical Status

On June 9 Aidan began radiation treatment at NIH (National Institute of Health) in Bethesda, Maryland. He will have a total of 31 treatments, generally Monday-Friday in the morning. Treatments last only a few minutes, but with set-up and recovery from sedation, the process usually takes a couple of hours . The effects of radiation are cumulative, so side effects will worsen over the course of treatment.

Aidan had nausea beginning with the first treatment. Though his appetite was greatly diminished, he was willing to eat throughout the first week. Even so, he began to lose weight quickly, with a 5% loss in the first 10 days.

Unfortunately, at the end of week 2, Aidan developed mucositis, an extremely painful condition caused by the sloughing of cells in the digestive tract. He had difficulty swallowing and by Monday morning (June 22) was admitted to the inpatient unit at NIH for hydration and pain management.

Aidan has only eaten twice – once on Wednesday (part of a grilled cheese sandwich) and on Saturday (very small pieces of Wheat Thins). He’s consumed quite a few orange popsicles, but is fearful of trying to drink anything. (He is certain that there is a piece of chicken lodged in his throat.) He began TPN (total parenteral nutrition or IV feedings) on June 29.

Other Important Developments

Aidan is conquering his new Power Popper (shoots small foam balls). So far he has popped quite a few visitors and doctors. More will follow.

Shaun the Sheep is the current favorite in the video department. Apparently one (if under the age of 6) can watch it for many hours without getting bored.

Aidan turned 5 on June 29!! Watch the next post for all the festive details!