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.