Can't Let Go

Well, we didn’t hear anything earth-shattering at our meeting with Dr. X and Dr. Y yesterday. They said pretty much exactly what I thought they would say, which is that no one can definitively know what would have happened if we’d taken Hudson to the ER 9 hours earlier. Dr. Y, the infectious disease specialist, said maybe, maybe if they’d started treatment for meningitis right away at that point, maybe it would have made a difference in the outcome, but both Dr. Y and Dr. X (the PICU doc) said they thought it was highly unlikely that anyone in the ER would have done that for Hudson at that time based on what they knew about how she had behaved the night before (she ate a big meal, seemed chipper, fever went down), and how she presented clinically later that morning at the pediatrician (normal white blood cell count, fever back down, still responsive, said bye-bye to the doctor and waved). Lumbar punctures have risks and given that Hudson was 17 months old (and therefore not in a high-risk group for meningitis) and probably looked like she just had a nasty virus, it’s unlikely that ER docs would have taken that step at that point, absent seeing some evidence of neurological involvement. Dr. X says that evidence must not have been there, because Hudson’s pediatrician did not notice anything like that later in the morning. This is one of the things that continues to torture me—Hudson had a droopy eye along with her fever the day before, and as the day and overnight went on, it actually got swollen. The pediatrician saw this, too, and thought it was just an eye infection of some sort, or just related to whatever infection was causing the fever. So the thing I keep hanging my hat on is maybe an ER doc at a children’s hospital would have seen Hudson’s eye and heard about the fever not responding to medication and been more suspicious—after all, they deal with those kinds of crazy things much more often. That said, I don’t blame the pediatrician at all, which does make you wonder how, then, I can blame myself (and indeed, someone commented to this effect before). [ADDED AFTER POSTING (and I'm doing this to remind myself of yet another important fact for when I read this again in the future:  It is also highly unlikely that Hudson's swollen eye was a neurological event, since it would only be "droopy" if swelling in her brain was already putting pressure on her brain stem-- her first CT at the ER showed no such thing, so the swollen eye was, in fact, probably just related to the sinus infection behind her right eye, and not evidence of "neurological involvement" at that point in time].

They also have no way of knowing when the infection actually spread into her cerebrospinal fluid (CSF)—Dr. Y said given the rapid progression of the infection, it was certainly possible that even if they’d done a spinal tap earlier in the day, it might have been clear at that time. They just don’t know. All they know is that at 9AM that morning, her white blood cell count was a very normal 6.5 (normal is between around 4.5 and 10.5) and by the time they took her blood, around 4PM that afternoon in the ER (after we waited almost 2 hours in the waiting room and triage), it had dropped to .87 (which is what a post-chemotherapy inpatient might exhibit—it is dangerously low). By the time they did the tap, which was not until around 6PM, 4 or so hours after we got to the ER, her CSF was already cloudy. Dr. Y said usually when they see cloudy CSF like that, it’s due to the patient’s white blood cells replicating rapidly to fight off the infection. In Hudson’s case, it was cloudy due to the bacteria itself replicating so rapidly. The infection just totally overwhelmed her little body, never even giving her immune system an opportunity to fight it off. No one, not the pediatrician, not the ER docs, and not even the PICU doc or the infectious disease doc, expected the outcome we got—they knew it was a nasty infection, but they do not understand why it progressed so quickly to the point that Hudson was basically brain dead 18 hours after she was diagnosed. Dr. Y said the only other cases he’s seen where an infection overwhelms the system like that is in patients who do not have a spleen (your spleen is one of the main infection-fighting organs in your body—it produces the white blood cells that make antibodies against bacteria and viruses). He said they don’t know whether Hudson had a spleen or not (we didn’t do an autopsy), but he had looked at her microscopic blood slides and those showed none of the signs they would normally see in a patient without a spleen. They ran a few other immunology tests on her while she was still alive, to see if she had any other immunosuppression issues that we were unaware of, but those all appeared normal (although given that her immune system was literally in a battle for Hudson’s life, those results may or may not be accurate). And anyway, kids with immune system problems usually end up in the ER long before they are 17 months old. So it really did just come down to the world’s worst luck—she was exposed to a strep pneumo bacteria strain that is not currently included in vaccinations (Hudson was vaccinated on schedule for everything, but current vaccines are effective against only about 10% of strep pneumo strains) and it behaved in a way that no one can really explain.

But like I said, we knew most of this already. I finally just came out and told them that the main thing I was hoping to hear (because I have just been beating myself up about it) was that we did everything right from beginning to end and that there’s nothing more we could have done. Dr. Y said, “Well, this case is the closest I could ever come to saying that.” Dr. X agreed, saying that if he could tell me something that definite, he would, and reiterating how unlikely it was that Hudson would have been tested and treated for meningitis at 5AM Monday morning.

But still I wonder. Still I want my goddamned second chance. Still I just want to rewind, take her to the ER as soon as her fever quit responding to the medication, and see what happens. In my mind’s eye, they see the droopy eye, see how sleepy she is, ask me if she’s had any leg pains, which I then remember that yes, it seemed like she had an hour before at home. They do a CT, see the sinus infection behind her right eye, and decide to do the spinal tap, because infections like that are often associated with meningitis in kids that age (which is what the ER docs told us later that day). Or they at least run a blood culture that shows she has an infection in her blood and that her white blood cell count is off the chart high (and went into free fall the rest of the morning, which is why it was in the “normal” range at 9AM). Either way, they start antibiotics immediately, killing off the relentless bacteria before it can progress to the point of no return. Hudson gets admitted to a general ward, where we have to entertain her for three weeks while she continues the IV antibiotics. At worst, she loses her hearing (which would have been awful, but I would have cut off my own ears if it meant she would be here with me today). And she comes home with us. And now she is gearing up for a new year at school and making me laugh every single day.

I think I realize now that no matter what they told me, my grief would still try to tell me differently, because I just want Hudson back so badly. Nothing they could say will ever change the fact that I want to be able to rewind so that I could at least know that I had done everything I possibly could. Of course, I know, too, that if we’d done that, and she had still died, I’d then be wondering why I didn’t take her to the ER on Sunday afternoon, when her temp spiked to 104, and so on, and so on, and so on.

There’s just no getting around it. Ed told me very gently yesterday, “Sweetie, I think you’re just going to have to find a way to let it go.” I know he’s right. And I really want to. Now if I can just figure out how.