Medically Complex and the Stories of Our Lives

Cancer, 99% Certainty In a very kind, compassionate voice she relayed the news.  The CT scan had revealed a large, long tumor along his spine and sympathetic nervous system: “homogenous but abnormal posterior mediastinal soft tissue density.” We were to be admitted to the 7 th   floor for the night and begin the day with an MRI, more blood tests, and a urine catch.  “Don’t worry until you have to” were her words.  Yea, ok.  She slipped out the door and tears slipped out of my eyes…I was too tired to think clearly, or keep my wits about me.  It was 1130pm and my emotions were already worn to the bone.  I was alone and tired and I had no resistance to fear. When the doctor walked out of the room I melted.  I was suddenly thrust back to the day Rhyse was born, October 17 th , 2011 when an attending doctor told me Rhyse was “probably terminal.”  I never allowed myself to go back there emotionally, nor did I entertain the idea that I would once again be looking at the word, “

The Dreaded CT Next on the list was a CT-scan.  What an ordeal that is.  The nurse came in the room with two, monster size cups of water laced with dye to slowly administer via Rhyse’s gtube.  I sucked the fluid up into one of my 60 ml syringes and ml by ml pushed each cup of water into his stomach, over the course of two hours.  At 7pm he was finally eligible for the scan, but no one came to get us.  After nearly an hour we were still waiting. If I had the energy I would have tracked down a nurse and inquired.   But I was too tired, and didn’t want to leave Rhyse alone on a gurney with side rails so large his entire body could roll through! Finally a nurse came in saying he over-heard someone on the phone discussing Rhyse’s CT.  Apparently the problem was IV number 8, the scalp IV. Up to this point no one had experience administering the CT-scan dye into a scalp vein: they didn’t know if there would a negative reaction or not. I didn’t even know there   was   going to be more