This is a photo of Charlie from this morning—Day 11 at the Cedars-Sinai PICU. Hope I didn’t scare anyone yesterday by not posting but we were having the obligatory Night from Hell that seems to be a part of any PICU visit (and a much more frequent occurrence in the NICU). I’m operating purely on fumes (from the ubiquitous Cedars-Sinai macaroni and cheese?) and won’t go into all the gruesome details of what happened last night but I’ll say that as of this morning, Charlie has returned to his cheery, smiling, normal self and now we’re just in a waiting game for the shunt surgery that is scheduled for Monday (God-willing—oh, and BITE ME, Evil Eye!).
Even when Charlie was doing well yesterday I was in a foul, irritable mood for some reason. I think the combination of sleep deprivation, worry, and occasional bouts of terror eventually takes it toll. The day was mostly uneventful except when the doctor came to remove the draining tube from Charlie’s abdomen and then gave him several sutures while he was wide awake. That was awful but he got over it fast enough—with the help of a donut as big as his face!
Throughout our visit, they’ve been doing these tests with Charlie’s external ventricular drain to make sure that he still needs the shunt. It would be fantastic, of course, to find out that he no longer needed it, but both tests last week were quite stressful and were deemed a failure. Fine. He’s had the shunt for three and a half years with no incidents, he can have it for many more years. But for some reason, they decided to try that experiment again yesterday where they clamp off his EVD and monitor the pressure in his brain. Following a day of that, he went down for a nap at 4 (which he’s rarely done here) and then woke up at 6 like a completely different person. This is where I’ll skip all the details but let’s just say the next seven hours were the closest I hope I’ll ever come to turning into Shirley MacLaine in “Terms of Endearment.” And while I don’t think I’m an hysteric in these situations—AT ALL—I guess I did make several references to “The Exorcist” over the course of the night, first when Charlie’s ICP (intracranial pressure) numbers went through the roof and he jerked up suddenly out of a deep sleep and vomited what seemed like buckets of Linda Blair-like goop, and then when his increased ICP made him wrench out of bed in pain, again from a sound sleep, and almost seem (to my adrenaline-soaked brain) like he was levitating off the bed. Hey, at least his head didn't rotate 360 degrees. But unlike his normal self, he was inconsolable and just plain bizarre. The neuro resident on call came and woke him up (which took some doing from his sound sleep, God love him) and peppered him with questions that he eventually answered which was very reassuring but he was still acting erratically and after a second vomiting episode, they undid the clamp and we were sent for an emergency midnight CT scan. It’s always a little ghoulish getting procedures done late at night around here because you know they would never schedule those normally and that there’s some scary shit going on with everyone you see. But by then the unclamped EVD seemed to do the trick and by the time we were headed back to the PICU at about 1 am Charlie had returned to his normal, inquisitive self, thank God. The neuro resident finally came back around 4 am with the CT scan results. So Charlie DOES need the shunt, obviously, which is fine by me, and there will be no more tests.
Before any of that happened and I was already feeling so yucky, I was wondering if I tend to be more “together” in the throes of a real crisis than I am during the down time where things are going well and we’re just waiting for the next step. I think that IS sometimes true and I’m not sure why. Is it because in those truly terrifying moments I HAVE to hold it together but in the down time I have the luxury to let all my negative stuff and fears come to the surface? On the other hand, I was hardly an Ascended Master during those hellish hours last night—I was pacing the room as furiously as a 1950s movie husband waiting for his wife’s delivery and I was cornering every medical professional and asking questions that I knew the answers to but telling them what I needed them to say to reassure me. Is there anything scarier than seeing your child go through all this stuff? And that’s said with the total knowledge that overall he’s doing fantastically well and that everything’s going to be fine. I do have residual feelings of guilt that I’m overdramatizing stuff which I guess is sorta dumb since there’s not a parent on the planet who wouldn’t have been terrified in that situation. I even had those feelings when we were in the NICU which was really ridiculous considering Charlie weighed a pound and we were facing endless traumatic scenarios.
Charlie got to get out of bed for the first time in 10 days yesterday which was great. He couldn’t walk or anything, they just let him sit in Kendall’s lap and then re-leveled his EVD. But now, after everything that happened, he’s back in bed for the duration, which is fine since we’re still scheduled for Monday (cross fingers, spit three dozen times). Infectious Diseases just came in a second ago with the good news that nothing so far has grown on the cultures of the voluminous fluid that was drained out of his peritoneal cavity the other day. Great news which could change, but won’t, right? (I’ve got to figure out my tortured relationship with that damned Evil Eye once and for all!)
Through everything, Turner Classic Movies flickers on our elevated flat-screen. During the worst of Charlie’s episode last night, the tortuous “A Place in the Sun” was on with tragic Montgomery Clift accidentally (or WAS it?) offing his fiancé, frumpy Shelley Winters so that he could be with stunningly beautiful Elizabeth Taylor. That movie gives me a major mood swing every time I see it so it couldn’t have been more appropriate for the late-night freak show. And now, with Kendall still sleeping and Charlie napping peacefully, “You Can’t Take It With You” is on—Frank Capra’s wonderful screwball comedy with Jimmy Stewart, Jean Arthur, and so many great people, and THAT could not be more appropriate for the wildly different and much more fun place we’re at today! After his late-night CT scan (never easy for him), Charlie fell back asleep and woke up at 5:30 completely back to normal, ravenously hungry (always comforting for a Jewish parent!), and wanting to see his garbage truck videos. I was too wired to fall asleep all night with all that was happening but hey…at least I finally got to watch that final episode of “Downtown Abbey.” I’ll avoid any spoilers but just say about the very end, “Fuck! Really, Julian Fellowes?”
But I take the fact that I’m back to obsessing about TV shows and movies as very good news for my mental state. I was supposed to liveblog the Oscars again on Sunday night for MSN but decided, with great regret and sadness, that I better not risk it with my nerves ranging between those of a meth addict and Christian Slater losing a shitload of weight for a movie role.
It really helps me to write in this blog during this experience but I can’t help but be struck by the me, me, me, obsessive navel-gazing that is certainly not the case (most of the time) in my movie-writing over the past two years. Oh well, what else can I possibly write about on here but MY experience? I'm not forcing anyone to read it! Thanks to everyone for your wishes, prayers, and good thoughts about Charlie!
Had two recent stints in the hospital myself recently, but everything Charlie is going through makes my experience seem like a walk in the park. Tests that make your child vomit and experience terrible pain - dear God! I'm glad the films are a distraction. Watching a bit of "A Farewell to Arms" with Gary Cooper a few nights ago (so 30s! Gary Cooper paired with Helen Hayes!) made me realize I've never watched a film made from a Hemingway novel all the way through.
Posted by: Judith Brodhead | February 22, 2013 at 12:08 PM
Danny, you have all been through quite a lotand I am amazed that you still manage to have your great sense of humor. Don't worry about your blogs being about me, me me.. They aren't and what you are going though is deeply personal.
I am so impressed with what a great Dad you are and how steadfastly you take this all in. Sending you, Kendall and Charlie all my best thoughts and prayers.. Here's to Monday..
Posted by: Robin Najar | February 22, 2013 at 12:44 PM
You hardly have to force anyone to read this blog, Danny...for myself, I'm fascinated and deeply moved by Charlie's journey through this medical odyssey, and his family's emotional journey beside him. As hard as it is, you are all so clearly blessed by your love for each other, and that leaves me, and I'd guess every other reader of this blog, pulling hard for Charlie to be strong, be well, and be home with his family. I can't wait to read that post!
Also: this sentence made me laugh out loud!
"I was supposed to liveblog the Oscars again on Sunday night for MSN but decided, with great regret and sadness, that I better not risk it with my nerves ranging between those of a meth addict and Christian Slater losing a shitload of weight for a movie role."
So well put!
Thank you for writing your story for all of us, Danny.
Posted by: Donna | February 22, 2013 at 01:05 PM
Yikes!! I am so sorry that Charlie had to go through that awful experience with the shunt clamped. Not fair. We are crossing all our fingers for a Monday surgery for Charlie. Jonathan has now been here over 4 weeks, but, at age 30, he is rational, interested, motivated to get well, and at this moment, having music therapy. So fun! Love to all of you !
Posted by: Peggy Shecket | February 22, 2013 at 01:28 PM
I know what you mean about late night tests. Last year my daughter was sent for a MRI of the brain in the middle of the night and it is a very very surreal experience. Sitting in that rocking chair watching her in the tube was the longest hour. Time takes on a whole new dimension when you are in the hospital with your child. Hang in there, and know that there are people all over keeping you, Kendall, Charlie & Lea in their thoughts.
Posted by: Anne | February 22, 2013 at 02:21 PM
"Me, me, me?" HARDLY! WE are sooo grateful for that you share with us here. Many people are following this episode in your life and it strikes a chord for a lot of us. In one way or another, it is good for me to read this- I find myself KNOWING your feelings at moments- because I've felt so similar, and other times MARVELING at you and Kendall and your incredible devotion, love, kindness, and release of the situation. Seriously Danny, you are teaching us good things. Some of your readers will go through situations in the future that may be similar, and having your writing in their minds will provide them with strength and courage. You, Kendall, and Charlie are amazing. (And, OH! how I teared up seeing that shot of Charlie in his mama's lap!) Love you guys.
Posted by: Mandy | February 22, 2013 at 03:05 PM
OY! I am continually amazed at how articulate you can be in this blog considering all the stress and sleep deprivation. I can't imagine that I would be able to even formulate a coherent sentence.
Here's hoping for smooth sailing all weekend and and quick and easy surgery and recovery on Monday!
Love to you all.
Did you really just watch the last episode of Downton Abbey? I thought you saw it all in London last year?
Posted by: Shari | February 22, 2013 at 03:37 PM
I did except for the final "Christmas episode," as they call it there, which isn't shown until December (I was there in October).
Posted by: Danny | February 22, 2013 at 03:47 PM
Thank God for your blogs! We would all be heartsick and terrified not knowing what was going on with you guys and Charlie if we didn't have you supplying us with the play by play. And by the way, any of us reading this are only here to support you so me, me, me all you want. If you don't, you'll explode. And speaking of exploding, your comment about keeping it together during the rough times and being negative during the "down" times is normal as far as I'm concerned. It's what happens to me in real life forget about the fact that you're in the hospital with your kid dealing with some really terrifying stuff. Frankly, it's nice to hear that it happens to someone else out there. All my appendages are crossed for a Monday surgery and for all to go well. Please give Kendall my best. You will make it through and then you will need a real vacation.
Heather
Posted by: Heather Muller | February 22, 2013 at 07:10 PM
If I were there, i would be strumming my guitar and singing charlie every great kids song in my repetoire to keep him amused and distracted. my heart goes out to him and hope tonight he sleeps like a baby! For you Danny, I would sing every song from South Pacific, Oklahoma, and maybe throw in one or two from Mary Poppins just to cheer you up!
Posted by: susie specter | February 22, 2013 at 07:26 PM