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.
I think I have watched that video a dozen times. It never gets old. Continued well-wishes for Charlie's recovery. I hope it won't be too long before you're back to watching bakers and walking the boulevard.
Posted by: Jane | February 27, 2013 at 12:10 AM
Danny, We love you and we love Charley. Why wouldn't we send you virtual hugs and a good listening ear during this difficult time. It's what real friends do when their buddies are hurting. Every post telling us the news of the day has been received with great hope and love that no more will Charley have to suffer pain and hospital visits. He needs to be back at the Farmer's Market with his fans. Home with the family that loves him so. That's what we all are praying for. And some day, we should take up a collection for $30K to buy Charlie his own star on the walk of fame. He deserves it.
Posted by: margalit | February 27, 2013 at 12:15 AM
Heck, yes! Get out of that place and go home!! Sending love for an easy day today and transition to HOME!
Posted by: Peggy Shecket | February 27, 2013 at 03:15 AM
YES!! I can go back to sleep now!!! xoxo
Posted by: Michelle | February 27, 2013 at 03:55 AM
Ahhhhhhhhhhh... Can you feel the collective sigh of relief that we all share with you, Kendall, and Charlie? Hopefully, today is the day you get to go home and all begin the real healing. Hugs and kisses to all! XOXOXOX
Posted by: Debbie Voll | February 27, 2013 at 05:12 AM
I have been crazy busy with work here, yet I find myself racing to my computer every morning hoping for an update on Charlie!
As a mom (though my boys are grown) I can completely understand the gamut of emotions you are experiencing. And for as much as this whole ride has tugged at my heartstrings as if Charlie were my own, I can only imagine what you and Kendall are really going through.
I am so thrilled and relieved that he is on the upswing and hope to see pictures of him on the floor with his trucks very soon!
Posted by: Wendy Leve-McClevey | February 27, 2013 at 06:45 AM
If my bosses are monitoring my computer usage, I'm sure I'm getting fired for checking Facebook so often, looking for Charlie updates. I feel your stress and exhuastion and relief. Hope all continues to go well. Hugs and kisses to you and Kendall and Leah and Charlie.
Posted by: Shari | February 27, 2013 at 07:05 AM
I *love* the idea of Charlie having his own star so much that I am fantasizing an act of what would undoubtedly be considered vandalism by law enforcement authorities and courts. Probably good that I don't like to fly, don't know how to mix cement, don't have the nerve to break laws, etc. so I will just continue here in the east in my imagination visualizing a Charlie star.
Posted by: Jan | February 27, 2013 at 07:42 AM
So happy to hear you have transferred to the regular pediatric floor and are thinking about home. I can only imagine what the time between the nurse's request and talking to the neurosurgeon was like.
That gift of books is so amazing!
I've also enjoyed the Spinning Wheel video. I loved Blood, Sweat & Tears...saw them decades ago at the Merriweather Post Pavilion in MD.
Posted by: Pat | February 27, 2013 at 07:44 AM
Hooray! Team Reynolds from Walla Walla are all breathing a huge sigh of relief. This is great news and we're grateful to hear it!
Posted by: Matt | February 27, 2013 at 08:38 AM
I hadn't seen the Spinning Wheel video yet, so thank you for posting it. What a perfect metaphor for the crazy ride you've been on. (Oh, what an agonizaing night/morning you had. Just reading about it brough tears to my eyes. So glad things turned around.)
Wishing you and your family continued strength and grace, and wishing Charlie a quick return to full health.
Posted by: alejna | February 27, 2013 at 09:39 AM
It must be so nice to be able to hold Charlie now, and for Charlie to be able to sit in an upright position! I'm so glad (knock on wood) that things seem to be improving. You must not miss the PICU. Love to you, Kendall, and especially Charlie.
Posted by: Julie R. | February 27, 2013 at 09:56 AM
Thank you Danny for sharing this journey. I love your amazing Leah and your Charlie is also an extraordinary child!
I agree - he needs his own star! Can't wait to see who he chooses on next your next walk down the Boulevard - always brightens my day.
Posted by: Diana | February 27, 2013 at 11:52 AM
Love and prayers from yet another complete stranger on the other side of the world! Hoping things starts looking up soon for Charlie and all your family and you can get him home x
Posted by: Emmi | February 27, 2013 at 01:02 PM
I've held off on commenting because it seems vaguely creepy to be as invested as I am in the saga of someone I don't know in real life, but I do feel moved to let you know that your personal, evocative writing is so piercingly vivid and heartfelt that it has real value even beyond conveying the specifics of your story. I can only imagine the pain of going through this with your child, but many of us have gone through--or will--similar ups and downs with our parents, siblings and other loved ones. The honest way you express your feelings and reactions to this tumultuous experience is very resonant and helpful to all of us who have gone through similar ups and downs, so just on that level I want you to know how important what you are doing is. You're a wonderful dad and a great communicator, and Charlie is a very lucky little boy to have you in his life. And yeah, you're lucky to have such a precious little angel in your life as well! All the best wishes in the world for you and your family.
Posted by: Diane | February 27, 2013 at 03:04 PM
I have tears streaming down my face that are the combination of pregnancy and great relief. For all of your wonderful expression, I have no words to describe how good it is to hear the news that all will be well.
Big hugs to you and to Kendall for your strength.
Heather
Posted by: Heather Muller | February 27, 2013 at 03:33 PM