Jew Eat Yet?

Sunday Funk

I forgot how much I always hated Sundays at Cedars. There’s often a weird vibe in the building on that day, the main decision-making doctors are never around, a lot of things seem deserted (even the Starbucks and Café are closed), and everything seems to by lying in wait for Monday morning. I used to spend the whole day just hoping nothing bad would happen.

Today was a difficult day because of the news we got in the early afternoon that after six days of no growth on the cultures of Charlie’s cerebrospinal fluid and the confidence of the infectious disease folks that the chance of infection looked mighty slim, they suddenly reported that some staphylo-fucking-coccus was growing on one of the samples. In a split second my mood pummeted from carefree giddiness at the thought of taking Charlie home perhaps as early as Thursday to utter despair at the idea that we could be here for several more weeks as they treat the infection with poor Charlie unable to get out of bed during all that time. Then began the classic rollercoaster of emotions and neuroses: I caused this to happen by being so smug and sure that things were going so well and we’re clearly being punished by the Evil Eye; how dare I complain about a few weeks when things could be so much worse; why was I able to endure five months in the NICU with Charlie’s life truly at risk for much of that time and now I’m freaking out over two weeks in the PICU where he’s pretty healthy and stable; to what if staying here longer is what GIVES him a serious infection or worse? Blah, blah, blah.

Then, after a hellish afternoon and evening where I’m hating myself for my lack of serenity and grace as much as I’m hating the staphylococcus, the PICU doctor comes to see us just after Charlie finally falls asleep for the night and says that he thinks the staphylococcus is not truly from Charlie’s CSF but from a contaminant that occurred later. He told us the reasons why he thought that, which sound very convincing to me, but emphasized that all decisions on whether to delay the surgery will be made by Charlie’s neurosurgeon who is famous for being very conservative about such things and he couldn’t even guess what he’s going to decide even though the rest of the team doesn’t believe that Charlie really has an infection after all. AAAARGHH!! So now I have hope again that his surgery to internalize the shunt may actually happen on Tuesday but I’m trying really hard to brace myself for the news that it won’t. The main message here is clearly one I already know: when you’re in this type of situation, YOU HAVE TO LIVE IN THE MOMENT and work really hard at maintaining a positive attitude of acceptance. All may be revealed tomorrow. Que sera sera?

Meanwhile, Charlie continues to amaze me with HIS adaptability and sweetness, even if I had a lousy day. For the first few days we were here he would cry when the nurses came to do their regular and frequent checks (temperature, blood pressure, measuring his stomach, shining a light in his eyes, etc.) but today I saw that every time the nurse came in the room and greeted him he’d hold up his arm for her to place the flexible thermometer in his armpit and then he’d hold his arm down tight for the reading; he’d lift up his butt before she asked him to so the measuring tape could go around his abdomen; he’d open his mouth and stick his tongue out so they could take a look—all of things automatically like he’s the most accommodating patient on the planet, not a three year old who’s trapped in a bed and can’t move his head. What really killed me is when the nurse changed all his sheets, which is sort of a laborious and unpleasant process when you’re hooked up to so many things as he is, and when she was finally done, he thanked her for making his bed so “nice and cozy.” Oy, that kid is so amazing. I’m not saying it’s all roses—he freaked out a few times today when he got frustrated or overwhelmed and his stats went through the roof but he calmed down pretty fast and mostly had smiles and sweetness for everyone.

The neuro team continued their morning wake-up call, but this time, when they came at 8 am, Charlie was awake and I was reading him a book and he cheerfully did everything they asked of him (thumbs up, push my hand as hard as you can with your foot, grab my hand really hard, etc.). True to form, the young neuro guy said to me in all seriousness, “He seems much more alert now than when I came in here two hours ago.” Yes, Doctor, strange at is seems, he actually IS more alert at 8 am when he’s wide awake and reading a book than at 6 am when he’s sound asleep. Crazy, huh?

As far as our TCM watching went, the depressing slate of films (as opposed to yesterday’s giddy musicals) matched my mood for much of the day. Charlie woke up to Mervyn Leroy’s God-awful “Quo Vadis” from 1951 with Robert Taylor and lovely Deborah Kerr and a truly sadistic Peter Ustinov as Nero taking great delight in watching the early Christians being devoured by lions in the Coliseum for sport. Yikes. Happily, we then moved on to three Elizabeth Taylor movies in a row: “Father of the Bride” (love it!), “Cat on a Hot Tin Roof” (superb, despite the censorship), and “Butterfield 8” (oy gevalt!). Here’s a short video of Charlie watching “Cat on a Hot Tin Roof.” I kept repeating Taylor’s name but instead of saying “Elizabeth Taylor,” he called her “A Little Bit Taylor!” Ha! After seeing her in “Butterfield 8,” I’d say “A Little Bit” was the LAST phrase you could use to describe the actress during those years!

 

Today being Sunday, Charlie and I would have normally gone to the Hollywood Farmers Market and played our Ouija Board-like game on the Hollywood Boulevard Walk of Fame where Charlie chooses a star for that week and I write about them on Facebook. My sister made this cool collage of some of Charlie's recent choices and I pray that he's back to picking celebrities very soon. 

I promise I will accept whatever tomorrow brings with as much grace, patience, and gratitude as I can muster, but PLEASE think NO INFECTION! Merci!

Charlie Dances with Gene Kelly and Cyd Charisse

Charlie just fell asleep in this position (above right) and I was stunned at how closely it resembled a photo from his days here in the NICU (above left). I keep running into people from those days in the halls and it’s like seeing old friends. And I’m remembering things about those five months that I thought I’d completely forgotten. Even going into the various public bathrooms at Cedars-Sinai immediately makes me think of what was going on when I last entered that space three and a half years ago!

We’re on Day 5 in the Pediatric Intensive Care Unit and it’s incredible how Charlie is staying in bed this whole time without too many complaints or attempts to get up. I honestly think that with all his experience in this hospital he just gets that this is what he has to do to get better, even though he clearly doesn’t like it. For the most part he was in a great mood today but the day started out with such a bizarre experience that I laugh every time I think about it. It was about seven in the morning and Charlie was in a deep sleep. A group of young neuro-residents came in, walked up to Charlie’s bed, and all but slapped him awake because they had to do a few tests. He woke up completely startled and naturally started crying. The head neuro guy immediately turned to me and said, “I’m concerned about your son’s behavior. I was in here yesterday and he seemed much happier.” I all but laughed in their faces. How would they respond if a group of white-coated men came into their bedroom and suddenly jostled them out of a sound sleep? “Come back in a few minutes,” I said, “and I promise you he’ll be happy again!” Which he was.

Believe me, I’m in awe of our neurosurgeon and his team—their expertise has saved Charlie’s life on numerous occasions, and I understand that they have to look for behaviorial signs to make sure that Charlie’s external shunt is working properly. But…let’s just say they tend to be a rather literal bunch! Luckily, we had our silent Turner Classic Movies going on the TV and on the screen at that moment was our wonderful friend Betty Garrett in “On the Town” singing with Frank Sinatra. I honestly believe that Betty was really looking down on Charlie and soothing him because he immediately calmed down when he saw her. During the five months we spent at the NICU after Charlie was born, the only time Kendall and I went out to an event together was for Betty Garrett’s 90th birthday celebration (she died at 91 two years ago this week). Here’s the post I wrote that night, the first one in months that wasn’t exclusively about our NICU experience.

I’m not sure why TCM was showing so many Gene Kelly movies today (it’s not his birthday), but Charlie loved them. He sang along with the “I’ve Got Rhythm” number in “An American in Paris” when Kelly entertains the cute French children (I need to get him one of those adorable 1950 French shorts with suspenders!) and was transfixed during most of “Singin’ in the Rain,” especially when he laid eyes on gorgeous Cyd Charisse in the “Broadway Melody” sequence. I caught that moment on video, including Charlie’s attempts to follow Gene and Cyd’s dance moves:

 

Still no infection showing up in Charlie’s cerebrospinal fluid which our neuro guys are still extracting from his head every day. When one of them did it this afternoon, he got some of the fluid on Charlie at which point Charlie laughed and said, “You just shpritzed me!” Where the heck did he ever learn the word “shpritz?”

It was Saturday so the Shabbos elevators at Cedars were stopping on every floor and I witnessed a post-services Kiddush in the Irving “Swifty” Lazar Lobby where I saw a guy in jeans and a t-shirt saying to one of the young Chasidic guys who had been leading the service, “Thanks so much—you guys are AWESOME!” It’s not that the majority of patients or staff at Cedars are Jewish but it’s a Jewish hospital, which I have to admit I like, so there are mezuzahs on every single room and wrapped up kosher food in a refrigerated case in the cafeteria next to the bacon omelets.

It’s very intense to be in a hospital all day long watching your child hooked up to so many different devices. Today I found myself contemplating the notion of “surrender” for the first time during this stint at Cedars, and I remembered what I wrote about it during our time in the NICU:

Driving to the hospital this morning, I thought of the word “surrender.” What can we do when we’re in situations like this but surrender and admit that we do NOT have control over the final outcome and to trust that Charlie’s journey and ours will be what they’re supposed to be in the end. Whenever I come to that conclusion I feel instant relief from my desperate desire to control everything which, of course, I can’t, but then I usually get tangled up in the web of that idea and get all confused. Surrender does not mean standing by passively and doing nothing—or liking what’s happening. I am actively talking to Charlie, working through my own fears, asking questions of doctors and nurses, and educating myself where appropriate (which does not mean googling every scary term I hear in passing). I rarely achieve the positive aspects of this kind of surrender, but it does flicker in from time to time and I’m always grateful for it.

Shabbat Shalom, everybody! 

Fear of Good News

Here’s the problem with Jews. We’re almost more comfortable when dire predictions are on the table because we can grit our teeth, expect the worst, and just forge ahead and get through it one moment at a time. But when gloom turns to hope, we sometimes feel more scared than we were when we were focusing on worst-case scenarios. Oh, THIS may happen? Hooray!! But wait…what if it doesn’t? Or what if focusing on potentially good news incurs the wrath of the Evil Eye and it’s all taken away from us? Most Jews know that the worst possible thing you can say to a Jewish mother, for example, is “Your baby looks so healthy! I bet he never gets sick or has a moment’s discomfort.” That is basically the equivalent of saying, “Your baby is doomed to hell’s eternal fires.”

I’m absolutely, completely THRILLED that we had a really good day with Charlie at the PICU and got some good news about his condition...BUT...in some ways it also makes me more on edge. I was working so hard all week to prepare myself for the possibility of a long haul, as the surgeon said was quite possible, but now, with the new information, I am DESPERATELY HOPING that we may be home by the end of next week. Breathe…breathe…take one day at a time…just be happy that the infectious disease folks seem so certain that there’s no infections present in Charlie’s CSF (cerebrospinal fluid) and that even our very conservative neurosurgeon is thinking that he may be able to operate as early as Tuesday afternoon if that persists. Yippee!! But yes, Mr. Fucking Evil Eye, that could change at any time, and if any infections are detected in the daily examinations of the CSF, we’ll have to spend at least two more weeks in intensive care before they can schedule the surgery. Is it beyond neurotic that I can’t just be purely happy with good news? I am, believe me, but I’m also wired to be a little scared of having too much hope for things going the way I want them to. Is that the genetic result of centuries of persecution?

Charlie was in great spirits today. He’s still frustrated at not being able to get up but our wonderful family members and friends set him up with an iPad, a portable DVD player, and hours and hours of garbage truck-related fun! We had a lot of great visits and one friend even brought Charlie a crazy cool puppet stage that puts the Von Trapp children’s “Lonely Goatherd” theater to shame!

The nurses continue to experiment with their gauze-based millinery on Charlie’s head, trying to protect his external shunt. Today’s winner bore a strong resemblance to Olivia de Havilland’s head gear in the 1938 version of “The Adventures of Robin Hood.”

I now feel completely re-acclimated to the gigantic Cedars-Sinai complex and can easily get from one end of it to the other in the shortest possible time. I'm still having plenty of PTSD-like flashbacks from 2009 but on the other hand, having gone through that experience is making this one so much easier.

Here’s to more good news in the days to come without the specter of that damn Evil Eye! 

Charlie Hearts Scarlett O’Hara

And now the waiting begins. We had a fairly uneventful Valentine’s Day in the PICU mostly spent trying to keep Charlie from trying to sit up or pull on his external shunt. The biggest challenge for anyone in his situation, much less an active three year old, is being completely bedridden for so long and having to keep your head level with the device hanging next to you that is collecting the cerebrospinal fluid exiting your brain. Any sudden moves and Charlie could experience serious pain or worse. My biggest fear was that he would yank the tubing coming out of his head and he tried to a few times. Throughout the day, the nurses tried to cover his head with various configurations of gauze—some looking like Sikh turbans, some making him look like Marlene Dietrich in “The Garden of Allah,” and some tranforming him into a returning Civil War soldier.

The really good news today came from the infectious disease folks who are monitoring the fluids removed during yesterday’s surgery to see if anything starts growing which would indicate that there’s some kind of infection. So far nothing, despite the neurosurgeon’s hunch that he may have a slow-growing variety. I’m now daring to hold out hope that maybe nothing will grow in those cultures over the weekend and that we could conceivably start talking about the surgery to replace the shunt next week. But we must wait since the surgeon is known for being extra cautious—and really, despite my desire to get home, who can argue with that?

While Charlie was watching HOURS of strange YouTube videos of garbage trucks, cement mixers, and street sweepers on my iPhone, we had Turner Classic Movies going on all day with no sound. I watched silent versions of “The Sandpiper” (gloriously awful Elizabeth Taylor/Richard Burton vehicle from 1965 with our pal Eva Marie Saint and a very young Charles Bronson), the crazy “The Garden of Allah” (thus my familiarity with Marlene Dietrich’s head gear) with Charles Boyer as a lusty Trappist Monk, and “Gone With the Wind,” which I haven’t seen in a few years and which looked absolutely gorgeous. That was the only film that repeatedly caught Charlie’s attention, first when colorful prostitute Belle Watling appeared on screen and then during many of Scarlett O’Hara’s machinations.

I must say that watching Vivien Leigh do that entire role without sound impressed me even more what a magnificent actress she was and made me think how much she truly did deserve that Oscar. Hattie McDaniel, too. At various points, I regaled our visitors and the nursing staff with my voiceovers of the lines the characters were saying since I can almost recite the nearly four-hour film from memory. “War, war war! This war talk’s spoiling the fun at every party this spring—I get so bored I could scream!” “Don’t you know? That’s Rhett Butler. He’s from Charleston.” “Don’t be scared, chickens! Your big sister was just cleaning the gun and it went off. It nearly scared her half to death!” “Oh, Mista Rhett—you sho is bad!” “No, I don’t think I’ll kiss you, although you need kissing badly. That’s what’s wrong with you. You should be kissed and often, and by someone who knows how.” “I’ll go home. And I’ll think of some way to get him back. After all…tomorrow is another day!” I’m glad that Charlie showed an appreciation for the extraordinary talents of Ms. Leigh and the others.

We had some visits from old friends from the NICU. I really love that place, as eager as I am to get the hell out of there. It’s funny being back in that position of knowing where I’m going to be all day, every day, and what I’ll be doing. As scary as it is, there’s also a kind of comfort in that.

Here’s a quick video I did of Charlie before he fell asleep tonight—just as Rhett was leaving Scarlett and she was refusing to accept defeat:

 

First Hurdle

Charlie got through his surgery today with flying colors—they removed his VP shunt and he now has an external one for the duration of our hospital stay until everything is resolved enough to put a new one back into his head. In the best-case scenario, if no infection is found, that second surgery could happen next week. But our neurosurgeon was suspicious because of the color of the fluid that they drained so I’m bracing myself that there may be an infection and then he’ll have to wait until that is completely cleared up before they put a new shunt in because if they don’t, the plastic shunt and catheter will just get clogged up again and we’ll be back to square one. We talked to the abdominal team about the different options on their end for placing the catheter. If they don’t feel that they can find a safe place in the peritoneal cavity because of all the scar tissue, they may direct the catheter to Charlie’s gall bladder at which point the cerebrospinal fluid draining from his head may be released through his bile or they could even direct it into a vein to be absorbed into his bloodstream which doesn’t seem like an option they want to take unless there’s no other choice. We’ll see.

One of the hardest parts of the day was not being able to go with Charlie into the operating room. We were able to go as far as pre-op (I’ve been in that ice cold crowded area at Cedars many times, with Charlie for his many surgeries as a baby and when I had my own kidney stone surgery a year and a half ago) and it just shattered me when Charlie kept asking us to stay with him. We had to explain that we couldn’t come with for the last part but Dr. Danielpour was great with him as they wheeled him away and distracted him enough that it went much better than I anticipated. It was actually harder on us. As Charlie was wheeled into the operating room and we were walking out of pre-op to the waiting area, there was an Arab woman who was there with her elderly mother who was having surgery. She had been watching Charlie and she saw Kendall’s face when they took him away and just opened her arms. Kendall collapsed into them, sobbing and this stranger comforted her and assured her everything was going to be okay. If ever there was a moment where I was convinced that we are all the same and that these insane squabbles different groups create with each other are completely unnecessary, that was it.

The surgery lasted about an hour and a half and it was very hard for Charlie when he first woke up and realized he had even more tubes and things coming out of him and that he wasn’t allowed to move very much. He cried and freaked out for a while but is such a trooper that within a few hours he was charming the nurses again with talks of garbage trucks and recycling and at one point he sang “Spinning Wheel” in its entirety with such gusto and so loudly that I was worried his external shunt was going to pop out! For those who aren’t on Facebook and didn’t see his earlier rendition of that tune (he knows even more of the song now!), here’s the video I posted a few weeks ago:

 

 

We’re settling in for the long haul and realizing that for a little while once again Cedars will be our primary existence. Again, there are such great people there—so skilled and kind—and we are so grateful for that. But I do have to relate one incident from this morning before surgery that I now find so funny it really must find its way into one of the network hospital dramas. There is a lovely woman who volunteers to wander through the PICU (and I imagine other parts of the hospital) with her guitar and play music for the children to make them feel better. All of the children in the PICU seemed particularly calm this morning but we watched as the guitar-playing woman went from room to room and each child burst into hysterical tears the minute she started playing. Charlie, who obviously loves music, followed suit. I enjoyed this woman’s rendition of “My Darling Clementine” very much but within ten seconds Charlie was inconsolable and we had to ask her to stop. So sorry, lady—if it were up to me, I would have had you do an entire Carole King concert!

Completely exhausted so will sign off for now. Thanks for all the prayers, good thoughts, messages, and visits!

Meanwhile…Back at Cedars

It’s been three and a half years since we left Cedars-Sinai Hospital after Charlie’s initial five-month stay when he was born at 24 weeks and weighed only a pound. We’ve had doctors’ appointments and visits and it’s always bittersweet and PTSD-ish being in those buildings. But now we’re back and it’s uncanny how quickly everything becomes so familiar again—it seems like I have a specific memory of every spot in this complex. Here’s where I was sitting when I found this out; I was standing at this window on my cell phone when I called my sister to tell her that Charlie’s twin brother had died after 12 hours; this is the elevator we took for Charlie’s 3rd and 4th surgeries; I was eating a banana in this spot on this day; I was feeling this way when I walked out onto the plaze on the day the doctors were worried about his head circumference, etc. Not all traumatic stuff—lots of good memories, too, with everything, the good and the bad, swathed in gratitude and love for so many of the people who work at this place. And now I guess we'll get some new place-based memories since the Pediatric Intensive Care Unit has moved to a glittering new structure that was under construction when we were last here as residents.

The photo above was taken when Charlie finally fell asleep after 12 hours of poking, prodding, ultrasounds, x-rays, and CT scans. We went in this morning for our yearly check-up with Charlie’s neurosurgeon. He’s been having this issue with a distended hard stomach and we’ve been to the pediatrician twice in the past week thinking it was just constipation and treating that. My worst fear was that it had something to do with his shunt and I was googling “shunt malfunction” by the hour but he had NO symptoms. But it was malfunctioning, damn it. The cerebrospinal fluid that drains through the shunt to his peritoneal cavity because of the Grade III and IV intraventricular hemorrhages he had the day he was born was not being absorbed properly, thus the distended stomach. After a series of ultrasounds that determined what was going on, he was admitted back into the hospital. (I just realized I didn't have to look up a single one of those terms—my Cedars-sponsored medical training is still resident in my own brain!) 

It breaks my heart every time Charlie says he wants to go outside, or asks when we’re going home. We try to explain it as best we can but the blood work, IVs, and multitude of tests where he had to remain very still were not easy. The worst is that after the surgery tomorrow he’ll have an external drain and will basically not be able to move much or get out of bed at all for the duration until the shunt is put back in. If there’s no infection, that could be a matter of days. If there is, it could be much longer. UGH. But like last time, we’ll all do what we have to do and be very very grateful for the kind and expert staff that he are lucky enough to have taking care of him. Here are some photos from the board in his room. They all use the name Charlie goes by lately, “Scoot,” and have told everyone that he likes to talk about garbage, garbage trucks, and recycling!

As terrified as we are, there’s nothing like this kind of event to put things in persepctive and make all the things I thought I was anxious about yesterday seem completely meaningless. And at the same time, my heart goes out to all the people who are dealing with sooo many much worse health crises, including many children and their parents. Hey, if we could just be here once at the beginning of each of President Obama's two terms, I can deal. But please, as I said on Facebook, if you want to send any kind of prayer for Charlie, we welcome all good wishes from the faithful, the non-faithful, or even craven idol worshipers. I remember once during the worst of it in 2009 I overheard a group of elderly black women talking about their church and I literally chased them down the hall to ask them to pray for Charlie. This isn’t a time when I contemplate whether such things “work” or not. Must get some sleep. Love to all.