Here's Charlie while we were watching the Oscars tonight just before he got a painful blood draw. Which makes me think of one of my all-time favorite movie lines, said by Doris Day in “Please Don’t Eat the Daisies”—“IS THERE A DIFFERENCE?” I’m not saying that watching the Academy Awards was as agonizing as what poor Charlie had to endure in preparation for tomorrow’s surgery but…at times it seemed almost as uncomfortable. It was hardly an ideal viewing situation, I admit, and I did laugh at a bunch of Seth McFarlane’s jokes, but man, some of them were just awful. The most offensive one for me was the joke about Lincoln—that despite Daniel Day-Lewis’s brilliant performance, there was another actor who succeeded in getting even more into Lincoln's head—John Wilkes Booth. Eww. Maybe it’s because I was sitting in an intensive care unit, but no matter how many years have passed, I don’t see anything funny in fatal gunshots to the head—there were probably several such victims coming into Cedars tonight alone. Yuck. I also hated the tired and offensive joke about Penelope Cruz and Salma Hayek and the one at Adele’s expense. But again, my attentions were really elsewhere tonight, despite the fact that we kept Charlie up late to watch the entire show and I regaled every nurse who walked in with my steady stream of snark about the broadcast.
I guess most parents would be terrified about their child’s imminent brain surgery, and it’s not like I’m not aware of the risks, but I am beyond thrilled that Charlie is going to get his new VP shunt tomorrow and we can finally say good-bye to that external drain that has forced him to stay unmoving in bed for the past 12 days! Yippee! He’s NPO (no food or drink) as of midnight tonight and his surgery won’t happen until noon tomorrow so the morning hours should be interesting since he usually wakes up ravenous in the PICU. But he’s very excited that after the surgery he’ll be able to move about without everyone freaking out and “re-leveling” him—they actually use a huge leveler like you’d find on a construction site to make sure his head is level with the device hanging to his right that is carefully collecting his cerebrospinal fluid.
I practically held my breath every time a doctor came near us today. There was a new doctor doing rounds this morning and I heard him talking about an infection Charlie had which made me dart into the hall in a panic to talk to him but it turned out he was just referring to that stupid staphylococcus that Charlie’s surgeon had already confirmed was caused by an outside contaminant. Then the weekend neuro team came in and said they they just wanted to have one more look at him before tomorrow’s surgery and I wanted to kiss every of them despite their true-to-form comment that “he looks more awake” now (at 9 am) than he did earlier (at 7 am when he was sound asleep and I basically shooed them out of the room). Yes, neuro-dudes, it’s funny how people look more awake WHEN THEY ARE AWAKE!
This will be the eighth time that the two brilliant surgeons, Drs. Danielpour and Frykman, will be operating on Charlie’s brain and abdomen—for different reasons. It will be his third ventriculo-peritoneal shunt but before that Dr. Danielpour put in a reservoir that stayed in his head for several months from which they had to manually extract cerebrospinal fluid several times a day with a huge needle. That was fun, let me tell you. Charlie couldn’t get a shunt until I think he was at least 6 lbs. and that took quite a while. Dr. Frykman also operated on Charlie’s necrotizing enterocolitis when he was barely over a pound. He had to cut out part of Charlie’s intestines and the poor kid had a colostomy bag for about three months which was a constant nightmare for the nurses because he was so little and it was hard to deal with. It was even Dr. Frykman who performed Charlie’s circumcision a few months later, on my birthday, September 4, 2009, a week before he was released from the NICU. Kendall was a little traumatized by the circumcision but I remember how we laughed because afterwards we went out to dinner together for the first time in months to celebrate my birthday—to a restaurant called CUT at the Beverly Wilshire. Ha ha! (And if there any “anti-circ” extremists who find this post because they spend their days Googling any mentions of circumcision and want to write a negative comment, please restrain yourself. If you don't, I will gather every foreskin in this hospital and FedEx it to you!)
Although he freaked out a few times this morning out of frustration, Charlie ended up being much calmer today than yesterday, thank God, and seemed to be in good spirits especially when we told him what he’d be able to do after surgery. We’ll have to go back to the PICU for another day and then probably to the regular pediatric floor for a bit until they’re sure everything’s okay with the shunt but if all goes well I’m hoping we might be home by mid-week. YES, I know various things could happen that could prevent that, and we’ll deal with them if they do, but I’m choosing to be positive, as strange as that sometimes is for me! If you have any prayers and good thoughts left, please send them our way tomorrow afternoon for a safe and successful surgery. Thank you all so much for your support and love, I can't tell you what it means to us!
To close, here’s my sweet, brave boy in January when he was playing with an actual Oscar that was won by our friend’s husband 45 years ago. If he ever wins one on his own, Charlie can tell the story about how he watched the 2013 Academy Awards from intensive care as he was getting his blood drawn!
A demain!
Thinking of you all today. Hope the NPO hours are not too frustrating.
Posted by: Pat | February 25, 2013 at 06:14 AM
Good luck Charlie!!!! Best wishes for a speedy recovery - hang in there little guy
Posted by: Elizabeth | February 25, 2013 at 07:30 AM
Prayers are with you today.
Posted by: Donna | February 25, 2013 at 07:32 AM
Hard to believe what Charlie's already been through in his life. Best wishes for a successful procedure today, and a speedy recovery!
Posted by: Paul | February 25, 2013 at 08:01 AM
I'm keeping Charlie in my thoughts today. Hoping it all goes as smoothly as possible.
Posted by: alejna | February 25, 2013 at 11:16 AM
Thinking good thoughts for you all! May Charlie's neurosurgeons experience great pride and satisfaction for a job well done this afternoon. All our best always.
Posted by: Maya Hagege | February 25, 2013 at 11:25 AM
We've been following Charlie's journey since the beginning. Best of luck to Charlie today! All our positive thoughts and prayers are with your family.
Posted by: Natalia | February 25, 2013 at 11:28 AM
Go Charlie! May those bright wings be brooding over you.
Posted by: amba (Annie Gottlieb) | February 25, 2013 at 11:59 AM
May Charlie's surgeons be their best possible selves today. My prayers are for you all today and the success of the surgery. Nam Yo Ho Renge Kyo x3.
Thank you again for all your updates! You will survive.
Heather
Posted by: Heather Muller | February 25, 2013 at 12:06 PM
May Charlie sail right through, and may you all be home in a few days!
Posted by: A | February 25, 2013 at 03:44 PM
just read this at 5 pm monday. hope everything went smoothly danny!
Posted by: susie specter | February 25, 2013 at 05:16 PM
Dear Charlie, today is a great day to have surgery. My oldest baby was born today, and she sent all her birthday juju to you! Get well,sweetie, so we can see you here in Chi town soon. You are loved.
xo
Posted by: shelly | February 25, 2013 at 06:29 PM
xoxox charlie and family! Hope he's well repaired and resting now...
Posted by: elizabeth conant | February 25, 2013 at 07:29 PM