Sunday Funk

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. 

I promise I will accept whatever tomorrow brings with as much grace, patience, and gratitude as I can muster, but PLEASE think NO INFECTION! Merci!

Comments

[Natalie]

I totally get the Sunday Funk....hated weekends in hospitals...it seemed every problem Ken had ALWAYS occipurred on a weekend...when it seemed all was half-staffed and no decisions ever made... My prayers that your darling boy gets out that hospital and home safely SOON!

[Jane]

No evil third eye, no infection, I've got everything crossed.

[Danita Cherney]

The lessons we learn from our children! Maybe the most important one yet - go with the flow. You can't control anything, only your reaction. Love and hugs to Charlie, and to you and Kendall.

[Peggy Shecket]

I get the Sunday funk, too. Had my very first crying day since Jon was diagnosed with leukemia on 1-23. I told him about Charlie yesterday and we are both sending our very best wishes for NO infection and a perfect replacement shunt right away!

[Jill Soloway]

SO MUCH LOVE to you. It's Monday morning Danny and the sun is coming out. Prayers for no infection and that you're back home soon.

[Danny]

Hi, all. Found out first thing this morning that we DO have to be here for at least two more weeks.

[Judy]

OMG, my daughter messaged me this am asking if I had checked your blog lately. I had given up but immediately came to it after having problems taking a Skype class on my iPad. Realized how trite it was compared to reading what you, Charlie, Kendall and Leah are going through. I'm going to reach out to the local Chabad rabbi and put Charlie o n his prayer list & you and Kendall , too. I love reading your writing but I really wish it wasn't about
The trauma you all have to endure. Oy vey, life can be so hard. Wish there was some way I could help. Must start a crochet project for Charlie.

[Mandy]

Fauna is just dyyying to see her friend, Charlie. She is very concerned and asks lots of questions and talks about him ALL the time. I so wish we could bring her in for a doughnut fest!
Arg, so bummed about infection you guys. I had fully planned to come over today but we all have a little snotty thing going on and I'm not sure if it's just from our trimming the moldy lemon tree yesterday or something more.
Miss you guys SO BIG!
xxoo

[Robin]

I am believing very strongly for NO INFECTION!!!!! I woke up at 4 am on Thursday last week and prayed this very thing, NO INFECTION in Charlies Body! Now common sense would tell me if it was going to be present why not in the first few days? Also there can be cross contamination. I hope and pray today is much brighter! Charlie is amazing and God has his hand on his life, and I hope that brings you comfort Danny! I think if he had infection he'd have fever, be crabby as H--L and sleepy and lethargic! I see a Happy Baby Boy in spite of the confinement, poking and the like, that brings me hope!!!! I cannot wait until he is walking the walk of fame picking his stars!! I LOVED the college Sue made, it is the sweetest, just like Charlie!!!

[Heather Muller]

I'd love to offer to come by and see you guys, but we have a bit of a cold! I have made you a dinner though. I hope you like chicken enchiladas. They are in my freezer so as soon as you know when you will be home let me know and I will bring them over with some salad or something.

All extremities that can be crossed are crossed. We think about you all every day.

Heather

[Donna]

Your son is amazing. I'm asking all my personal angels to watch over him and keep him free of infection.

[Sundeep]

Sending all of you oodles of Love xoxo

[Dr Judy]

For the record, I hate staphylococcus too. I am sorry that Charlie is stuck in the PICU on a short leash (aka EVD). However, I am SO happy he is not sick. As I am sure you know, kids with shunt infections can be pretty darn sick. I hope Charlie stays healthy while you count down the days of antibiotic therapy. Be sure every healthcare provider cleans/washes their hands before examining him. xo