I forgot how much I always hated Sundays at Cedars. There’s often a weird vibe in the building on that day, the main decision-making doctors are never around, a lot of things seem deserted (even the Starbucks and Café are closed), and everything seems to by lying in wait for Monday morning. I used to spend the whole day just hoping nothing bad would happen.
Today was a difficult day because of the news we got in the early afternoon that after six days of no growth on the cultures of Charlie’s cerebrospinal fluid and the confidence of the infectious disease folks that the chance of infection looked mighty slim, they suddenly reported that some staphylo-fucking-coccus was growing on one of the samples. In a split second my mood pummeted from carefree giddiness at the thought of taking Charlie home perhaps as early as Thursday to utter despair at the idea that we could be here for several more weeks as they treat the infection with poor Charlie unable to get out of bed during all that time. Then began the classic rollercoaster of emotions and neuroses: I caused this to happen by being so smug and sure that things were going so well and we’re clearly being punished by the Evil Eye; how dare I complain about a few weeks when things could be so much worse; why was I able to endure five months in the NICU with Charlie’s life truly at risk for much of that time and now I’m freaking out over two weeks in the PICU where he’s pretty healthy and stable; to what if staying here longer is what GIVES him a serious infection or worse? Blah, blah, blah.
Then, after a hellish afternoon and evening where I’m hating myself for my lack of serenity and grace as much as I’m hating the staphylococcus, the PICU doctor comes to see us just after Charlie finally falls asleep for the night and says that he thinks the staphylococcus is not truly from Charlie’s CSF but from a contaminant that occurred later. He told us the reasons why he thought that, which sound very convincing to me, but emphasized that all decisions on whether to delay the surgery will be made by Charlie’s neurosurgeon who is famous for being very conservative about such things and he couldn’t even guess what he’s going to decide even though the rest of the team doesn’t believe that Charlie really has an infection after all. AAAARGHH!! So now I have hope again that his surgery to internalize the shunt may actually happen on Tuesday but I’m trying really hard to brace myself for the news that it won’t. The main message here is clearly one I already know: when you’re in this type of situation, YOU HAVE TO LIVE IN THE MOMENT and work really hard at maintaining a positive attitude of acceptance. All may be revealed tomorrow. Que sera sera?
Meanwhile, Charlie continues to amaze me with HIS adaptability and sweetness, even if I had a lousy day. For the first few days we were here he would cry when the nurses came to do their regular and frequent checks (temperature, blood pressure, measuring his stomach, shining a light in his eyes, etc.) but today I saw that every time the nurse came in the room and greeted him he’d hold up his arm for her to place the flexible thermometer in his armpit and then he’d hold his arm down tight for the reading; he’d lift up his butt before she asked him to so the measuring tape could go around his abdomen; he’d open his mouth and stick his tongue out so they could take a look—all of things automatically like he’s the most accommodating patient on the planet, not a three year old who’s trapped in a bed and can’t move his head. What really killed me is when the nurse changed all his sheets, which is sort of a laborious and unpleasant process when you’re hooked up to so many things as he is, and when she was finally done, he thanked her for making his bed so “nice and cozy.” Oy, that kid is so amazing. I’m not saying it’s all roses—he freaked out a few times today when he got frustrated or overwhelmed and his stats went through the roof but he calmed down pretty fast and mostly had smiles and sweetness for everyone.
The neuro team continued their morning wake-up call, but this time, when they came at 8 am, Charlie was awake and I was reading him a book and he cheerfully did everything they asked of him (thumbs up, push my hand as hard as you can with your foot, grab my hand really hard, etc.). True to form, the young neuro guy said to me in all seriousness, “He seems much more alert now than when I came in here two hours ago.” Yes, Doctor, strange at is seems, he actually IS more alert at 8 am when he’s wide awake and reading a book than at 6 am when he’s sound asleep. Crazy, huh?
As far as our TCM watching went, the depressing slate of films (as opposed to yesterday’s giddy musicals) matched my mood for much of the day. Charlie woke up to Mervyn Leroy’s God-awful “Quo Vadis” from 1951 with Robert Taylor and lovely Deborah Kerr and a truly sadistic Peter Ustinov as Nero taking great delight in watching the early Christians being devoured by lions in the Coliseum for sport. Yikes. Happily, we then moved on to three Elizabeth Taylor movies in a row: “Father of the Bride” (love it!), “Cat on a Hot Tin Roof” (superb, despite the censorship), and “Butterfield 8” (oy gevalt!). Here’s a short video of Charlie watching “Cat on a Hot Tin Roof.” I kept repeating Taylor’s name but instead of saying “Elizabeth Taylor,” he called her “A Little Bit Taylor!” Ha! After seeing her in “Butterfield 8,” I’d say “A Little Bit” was the LAST phrase you could use to describe the actress during those years!
Today being Sunday, Charlie and I would have normally gone to the Hollywood Farmers Market and played our Ouija Board-like game on the Hollywood Boulevard Walk of Fame where Charlie chooses a star for that week and I write about them on Facebook. My sister made this cool collage of some of Charlie's recent choices and I pray that he's back to picking celebrities very soon.