Yesterday was an eventful day. Faith went down to the OR for a bronch (aka scope her airway) to see if there were any granuloma (or growths) in her airway. Like previous bronchs it was very difficult to get down her swollen vocal chords. The edema is still pretty significant, which was probably caused by her long term intubation (now you know why we were so stressed every time she got put back on the vent in the NICU!) Faith's pulmonary team wants an Ear, Nose and Throat (ENT) doc to do another bronch next week. There are some options to decrease the swelling such as a surgery to scrap off the scar tissue, but time and growth is the best option at this point. Faith did very well through the procedure and is back to her smiley self this morning.
When I was in the waiting room yesterday I read a quote in a magazine that I can't seem to get out of my head: "Ships are safe in harbors, but that's not what ships are for." This lead me to think about the dozens of kids at TCH who spend their lives in the hospital, thus the Safe Harbor Project was born! We want to advocate for these families and start an organization that works on getitng these kids home (SAFELY). Children deserve safe harbors at home, not in hospitals. Unfortunately as you all know from what has happened to us both times we went home, for medical fragile children like Faith, home is not always a safe place. SO this is our new mission! In order for things to change there needs to be new legislation to increase funding and awareness of this growing problem. We'll let you know as things progress and we get this project rolling.
Have a great day!
Brian and Jen