And now the waiting begins. We had a fairly uneventful Valentine’s Day in the PICU mostly spent trying to keep Charlie from trying to sit up or pull on his external shunt. The biggest challenge for anyone in his situation, much less an active three year old, is being completely bedridden for so long and having to keep your head level with the device hanging next to you that is collecting the cerebrospinal fluid exiting your brain. Any sudden moves and Charlie could experience serious pain or worse. My biggest fear was that he would yank the tubing coming out of his head and he tried to a few times. Throughout the day, the nurses tried to cover his head with various configurations of gauze—some looking like Sikh turbans, some making him look like Marlene Dietrich in “The Garden of Allah,” and some tranforming him into a returning Civil War soldier.
The really good news today came from the infectious disease folks who are monitoring the fluids removed during yesterday’s surgery to see if anything starts growing which would indicate that there’s some kind of infection. So far nothing, despite the neurosurgeon’s hunch that he may have a slow-growing variety. I’m now daring to hold out hope that maybe nothing will grow in those cultures over the weekend and that we could conceivably start talking about the surgery to replace the shunt next week. But we must wait since the surgeon is known for being extra cautious—and really, despite my desire to get home, who can argue with that?
While Charlie was watching HOURS of strange YouTube videos of garbage trucks, cement mixers, and street sweepers on my iPhone, we had Turner Classic Movies going on all day with no sound. I watched silent versions of “The Sandpiper” (gloriously awful Elizabeth Taylor/Richard Burton vehicle from 1965 with our pal Eva Marie Saint and a very young Charles Bronson), the crazy “The Garden of Allah” (thus my familiarity with Marlene Dietrich’s head gear) with Charles Boyer as a lusty Trappist Monk, and “Gone With the Wind,” which I haven’t seen in a few years and which looked absolutely gorgeous. That was the only film that repeatedly caught Charlie’s attention, first when colorful prostitute Belle Watling appeared on screen and then during many of Scarlett O’Hara’s machinations.
I must say that watching Vivien Leigh do that entire role without sound impressed me even more what a magnificent actress she was and made me think how much she truly did deserve that Oscar. Hattie McDaniel, too. At various points, I regaled our visitors and the nursing staff with my voiceovers of the lines the characters were saying since I can almost recite the nearly four-hour film from memory. “War, war war! This war talk’s spoiling the fun at every party this spring—I get so bored I could scream!” “Don’t you know? That’s Rhett Butler. He’s from Charleston.” “Don’t be scared, chickens! Your big sister was just cleaning the gun and it went off. It nearly scared her half to death!” “Oh, Mista Rhett—you sho is bad!” “No, I don’t think I’ll kiss you, although you need kissing badly. That’s what’s wrong with you. You should be kissed and often, and by someone who knows how.” “I’ll go home. And I’ll think of some way to get him back. After all…tomorrow is another day!” I’m glad that Charlie showed an appreciation for the extraordinary talents of Ms. Leigh and the others.
We had some visits from old friends from the NICU. I really love that place, as eager as I am to get the hell out of there. It’s funny being back in that position of knowing where I’m going to be all day, every day, and what I’ll be doing. As scary as it is, there’s also a kind of comfort in that.
Here’s a quick video I did of Charlie before he fell asleep tonight—just as Rhett was leaving Scarlett and she was refusing to accept defeat:
I love Charlie's singing! He's a natural!
Posted by: Jane | February 15, 2013 at 01:36 AM
Time to teach him a few more verses of Wheels on the Bus. He is so adorable. And Tomorrow's another day.
Posted by: margalit (@margalit) | February 15, 2013 at 02:26 AM
Charlie, for a guy in the middle of an important hospital visit, you look and sound terrific!
You are big and strong, your lungs are powerful, your memory is GREAT!, and I love your new headgear!
I can just imagine all of the fun that you are going to have when you leave the hospital and make your next visit to the Farmer's Market for breakfast and take your next stroll down the Hollywood Walk of the Stars!
Have fun and do another song for us soon!
Your friend in France,
Pamela
Posted by: The Pliers | February 15, 2013 at 03:50 AM
I love you love you love you. And we're all Scoot all the time over here. Have something to send him right away. Where is best? Home? Hospital? Betsy? xxo
Posted by: Alexis | February 15, 2013 at 08:46 AM
"Doop, dedudedu, dedededdoppdo!" LOVE the ad lib between the first verses! We love our little Charlie- and his mommy and daddy aren't half bad either! (:
Posted by: Mandy | February 15, 2013 at 11:18 AM
SO glad you are documenting this and writing about it so beautifully!
Posted by: Karen | February 15, 2013 at 11:35 AM
Charlie is a SUPER HERO! His rendition of The Wheels on the Bus is the perfect Valentine.
Posted by: Diana | February 15, 2013 at 11:44 AM
Charlie's headgear is FABULOUS, as is his singing ++++ Hang in there, little dude! And is Scarlett's brooch big enough or what??? (I can also quote that entire movie, but I am from Atlanta, aftah all...) HUGE LOVE to all y'all +++
Posted by: Kelly Hogan | February 15, 2013 at 12:18 PM
Love you so much, Charlie.
Posted by: Amba | February 15, 2013 at 01:25 PM
Rhett and Scarlet have nothing on Charlie. What a champ!
Love, Gramma Marilyn
Posted by: Marilyn Molnar | February 15, 2013 at 01:47 PM
Love to watch that sweet boy doin' this thing!! Sending hugs and kisses.
Posted by: Stephanie | February 15, 2013 at 09:28 PM
Charlie has the loveliest voice, and i adore his fingerplay gestures! He is a total DOLL, and the bravest boy champion of the world! I send him xoxoxo's!
Posted by: susie specter | February 16, 2013 at 09:51 AM