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!