Our View From the Third Floor
ICU Day Two
September 17, 2014
Our view right now from the third floor balcony is almost as magnificent as the sounds emanating through the halls of Building 10 today.
We are in such a beautiful place in an absolutely wonderful world while in the midst of a horrible disease...and when the strings section of the National Symphony Orchestra reached a crescendo, I think a few of my hot, wet, salty emotions escaped to the atrium floor.
It became evident this morning, through a combination of slurred speech, nasal tones, and a lack of gag reflex that all is not well in my sweet son's brain. He was sent for a swallow test in an obscure room in the depths of crazy corridors that is the NIH. My sweet son is not able to swallow water, let alone soft food or regular food. We were told that this is probably due to swelling at the surgery sight, and it should resolve itself naturally.
My emotions are running a hot, messy, salty course right now.
We are nothing but relieved that he survived this surgery. We are nothing but appreciative of the surgeon who performed this very difficult surgery. We are nothing but amazed by the care that Steven is receiving at the NIH.
At the same time, we are also nothing but heartbroken.