Bad news first. Trey needs a new VAD. Usually, when Trey is hooked up for infusions, he sits and watches TV. He barely even notices the needle or when the nurses flush saline through his port. Yesterday, as Trey’s nurse was pushing saline into his VAD, Trey began to squirm and then as the nurse kept flushing, he reached for me in pain. After talking to the IV team and getting doctor approval, the nurses sent Trey down for a Line-O-Gram, or dye study. Radioactive dye is pushed through Trey’s VAD and then a series of x-rays are taken to follow where the dye is going (sounds healthy, hey?). Apparently there is a crack in the catheter, allowing fluids to enter the tissue around Trey’s shoulder. This is what was causing him pain. Trey ended up having his infusion done through his hand yesterday. We’re waiting for a call from general surgery and I’ll update when we know when his surgery date is.
There was good news though yesterday too! Thank gosh. Trey’s Biochemical Disease doctor finally got the “MPS” cardiologist to interpret all of Trey’s results since birth. The GAG build up and Mitral Valve regurgitation from his November 2008 appointment has not progressed from his January 2008 appointment!! This is great news!! More than great news. We will also now be having appointments with this cardiologist instead of going through Biochemical Disease to find out results, which is good.
