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!