Thursday May 20
Monday’s CAT scan shows Nicholas has a mass between the chest wall and the right pleura (lung). All day Tuesday I waited with Nick, rationing ice chips because his stomach needs to be empty for surgery. “When are they gonna come Mom?” Frightened little boy.
Finally, at 7 pm they came for him. I sat in a chair in his eerily empty room because they took him in his bed; he was too weak to transfer to a wheel chair. At ten o’clock I was wandering the hallways. At midnight two of my fingers didn’t have fingernails. At 2 am the surgeon came in, his surgical hat in his hand.
I offered him the one chair as I stood at the dark window. He told me the six-hour surgery removed two fungal growths the size of golf balls. Thank God it isn’t more cancer. The fungus is called aspergillosis. It is an extremely difficult fungus to eradicate from an immune suppressed (neutropenic) body.
He told me he was pretty sure they got all of it and that no lung had been removed. My throat ached with the lump in it. I’m so grateful for his visit, his act of respect and kindness. It was hard not to start sobbing in front of the man. Thank God!
As soon as ICU would allow it I went to see Nick before 5 am. He was in an isolation room because of his risk for infection (neutropenia). He was still intubated with a big tube stuffed into the back of his throat. I watched him stir, and reach for the tube. “He’s waking up!” I yelled at the nurse in the hallway. Nick panicked. He flailed his arms like he was drowning and madly swatted at the tube. I thought he would pull it out.
“Nick, stop! Look at me!” I held his arms. The nurse was beside me. “Nicholas! If you don’t stop trying to pull the tube out I’m going to tie your arms down!”
Over my dead body!
“Nick, you want to write something down?” By the look in his eyes my little boy had something he wanted to say. I almost expected it to be a bad word but when I gave him paper and pen he shakily wrote, “OUT.”
With an obvious massive effort at self-control, and his huge brown eyes luminous and determined, Nick used sign language with his nurse and they negotiated the timing of the removal of the tube. The tube came out a little sooner than the original plan.
I could have giggled in delight of my little boy’s strength of character. I’m so PROUD of you! People with Nick’s magic, this kind of strength do not die; they go on in life and bring greatness to the world.
Unfortunately, the nurse told both of us when they had catheterized Nick for the surgery they discovered a cottage cheese like substance when they pulled back the foreskin of his penis. Nicholas used to be good about washing himself, but since he’s been so sick he’s getting only bed baths and then tolerates little touch since he hurts. I’ve stopped pushing Nick to let me clean it.
The nurse insisted that the area needed bathing, right now, or infection could set in. Nick’s face crumpled, it was the last straw, and even though his shoulders heaved in great big sobs, he didn’t make a sound.
I understand the nurse was doing what he thought right but the timing was horrible. It was another terrible day (a crappy day bead). ARRGGHHH!!! I wish I’d had the balls to tell that nurse to take a freakin’ hike and we would deal with this “pain session” later.