Here’s a photo of Charlie’s reverse mohawk, courtesy of his longtime brain surgeon. Have you noticed I'm including less pictures of Charlie lately? He's suddenly grown weary of me shoving my iPhone in his face and I don't want to push it. What? You mean you'd also have an issue if you were in the hospital for two weeks recovering from major surgery and YOUR father kept trying to snap photos of you? Selfish, selfish, selfish!
Today was another big transition day. I've noticed during these past weeks that Charlie’s desire, ability, and level of enthusiasm in singing the Blood, Sweat & Tears song “Spinning Wheel” has become the barometer against which I measure his overall health, mood, and brain activity! “What goes up, must come down, spinning wheel, got to go round!” Those words, when spontaneously sung by him, have the most deliciously calming effect on my soul.
Yesterday’s procedure went very well but I was unprepared for the kind of recovery I guess I should have expected from brain and abdominal surgery. He bounced back within a few hours from his first surgery two weeks ago to remove the malfunctioning shunt but that didn’t involve cutting through muscle and tissue. Throughout the day yesterday he was so miserable and unresponsive that I began to worry that perhaps the new shunt wasn’t working properly. They scheduled us for another midnight CT scan which always seems a bit ominous and he had a really difficult night. I finally climbed into his hospital bed at around 2 am and he grabbed tightly to my hand, even in his sleep, moaning in pain every time he woke up.
One of the worst moments of this entire hospital stay happened at about 7 am this morning when two nurses came into the room and told me that the neuro residents had been looking at Charlie’s CT scan “all night” and weren’t sure it was in the right position. They told me not to give Charlie any food or water in case we had to go back to surgery but that they wouldn’t know for sure what was going on until the neurosurgeon arrived at the hospital and checked the scans. My nerves, which were already as raw and bloodied as freshly ground meat immediately plummeted to despair and panic. Another surgery? Take out the shunt that they just put in yesterday? That was the final straw—my mind went to all sorts of places that I’ve been working so hard to keep it from going to while we’re in one-day-at-a-time survival mode. Could his tortured body take another surgery so soon when it was still reeling from the shock of the day before? Would they have to wait another two weeks to put a new shunt back in? What if they could never make the shunt work? And on and on and on. Charlie was awake and staring blankly, occasionally crying out if I tried to release my hand from his grip and Kendall was still sleeping on the cot next to the bed, so I just sat there frozen in utter fear and panic. I stared into the hall for about half an hour, and felt like I was about two minutes away from bursting out of our room and screaming like a lunatic, “DOES ANYONE FUCKING KNOW WHEN DR. DANIELPOUR IS GETTING HERE?” when at that very moment I saw him enter the PICU. After watching his face (which to me seemed grim) at the computer outside of our room reviewing Charlie's chart, he walked in, took one look at me and said, “What’s wrong?” I told him and he said, “What? Who told you that? The shunt is perfect!” Roller coaster leaving the station! I was so incredibly relieved that I burst into tears. Oy. I don't blame the nurses for what happened—they HAD to tell me that to make sure I didn't give Charlie any food. I realize this kind of thing happens in hospitals all the time. But...fuck!
As if dutifully obeying the good doctor’s positive pronouncements, Charlie immediately began to show marked signs of improvement. An hour later I got my first smile and an hour after that he was in my lap in the arm chair. When the nurse came in a few minutes later Charlie launched into the tune that did more to assuage my jittery mood than a bushel of Ativan ever could have: “What goes uuuup…must come dooooown. Spinnin' wheeeel, got to go round…” complete with his patented hand gestures. YES!! I know I JUST posted the video of Charlie singing this song towards the beginning of our hospital stay, but in honor of this milestone, I have to include it again here—I could watch it all day!
Charlie’s still not eating that much, is still on pain meds, and hasn’t tried walking yet after two weeks in bed, but at 5 tonight we transferred out of the intensive care unit and onto the regular pediatric floor and have every reason to believe we’ll be blowing this popsicle stand some time tomorrow. To anyone who’s still reading these posts, thank you for caring about Charlie and taking such an interest in our family. We’ve had such an outpouring of love from family, friends, and even complete strangers.
I was so touched when the nurse came in this morning with a big stack of packages for Charlie. Way back in 2001, when I was on staff at Heinemann, I worked with a wonderful author named Helen Frost (also a children’s book author and poet) on a book for teachers called “When I Whisper, Nobody Listens: Helping Young People Write About Difficult Issues” (ironically, the book was released the week of the 9/11 attacks). Helen and I rediscovered each other on Facebook a while ago and hearing about Charlie’s plight she asked a bunch of her children’s author friends to sign copies of their books for Charlie and mail them directly to Cedars. Above is a display of the fabulous books written by Helen, Nathan Clement, Janet Wong, and Joyce Sidman. Helen tells me there are more coming, too.
Thanks to everyone who has been following Charlie’s story for the past two weeks of ups and downs. I can’t even express the gratitude we feel for all of the positive energy being hurled in our direction.