Above is the only photo I took of Charlie today, right after he fell asleep at around 9 pm. It was a day of transition—at least for me. Wrapping my brain around Plan B. You know how when you’re flying to Europe and you get on the plane knowing it’s going to take around 12 hours or so and you hunker down in your seat and before you know it you’re there, the trip didn’t seem so long? But then sometimes when you’re flying somewhere much closer, say from L.A. to Chicago, and by the time the plane lands at O’Hare four hours later you think, “If I had to spend five more minutes on this plane, I’d put a gun to my head?” I guess that’s kind of where I was at today: I thought we were flying to Chicago, but apparently our plane is heading to Europe. I just need to get into that mindset of the longer flight.
It didn’t take long this morning for a resolution from yesterday’s angst. The neurosurgeon walked into Charlie’s room at about 8 am and immediately said we had to give him the two weeks of antibiotics before he could internalize the shunt. The ironic thing was that the staphylococcus I was obsessing about yesterday DID turn out to be caused by a contaminant, that wasn’t the issue at all—the real culprit was this extremely slow-growing bacteria that the doctor was worried about all along. The thing is, if Charlie wasn’t scheduled to have a shunt put back in his body, it wouldn’t be something they’d worry about—it’s apparently a very low-grade infection with no symptoms. But now they think that the reason the catheter depositing cerebrospinal fluid in his peritoneal cavity stopped working was because of this very slow-moving and usually harmless infection—and that if they put a new shunt in before attempting to really clear that up, we’ll just be back in the PICU in a matter of time with the same issue. There’s more but that’s the best I can do at explaining the situation—I hope any medical people who are reading this aren’t cringing at my description.
Truth be told, in many ways, the not knowing and hoping is way worse than the knowing even if the result is not what you wanted to hear. While I’m far from happy that Charlie has to spend two more weeks in his intensive care bed connected to his external ventricular drain without being able to move very much, I accept that this is what we have to do and I know we’ll get through it fine. Of course there are a million things to worry about during that time but I’m reaching that place that I had to find when we were in the NICU where I’m not exactly squashing my natural curiosity or desire to know the specifics about my son’s treatment, but I have to be a little bit more reserved in my questions, and start to think, “Is this something I really need/want to know? Will asking this question help Charlie in any way?” Believe me, I will always speak up if I feel I need to, but in situations like this there are also many times when you absolutely need to stand back a little and put your trust in the people who are saving your child’s life with their expertise and skill.
Charlie had a few heartbreaking moments today where he freaked out and wanted to get up and “play with my garbage trucks on the floor” but even at three and a half he seems to understand that he just can’t do that right now and that he has to stay in bed. The nurses told us about some kids his age who have to be restrained and that is a horror show that I’m so grateful we don’t have to be part of. Charlie seems incredibly accepting of his situation most of the time, he really is an inspiration.