My almost 5-year-old daughter Lexi nearly died when she was one, from meningococcal septicemia.
Meningococcal septicemia is what happens when you don't get meningitis, and instead your body declares all out war on the bacteria that causes meningitis. The thing is, the bacteria is carrying chemical weapons. Each one that your white cells destroys unleashes toxins into your body. So you end up being sluggish and lethargic, and won't wake up, and if you go to the hospital too early you'll be sent home with Tylenol – and die at home. Or if you get there just too late your child is just dead.
We were in the emergency room when Lexi presented with a petechial rash. Little purple pinpricks all over her body, that started to appear EVERYWHERE in seconds. And then, while we were there, I watched as her oxygen level dropped rapidly from 83% to 50-something. I ran to get a nurse immediately.
We were very lucky that it happened right then and there. We were at Seattle Children's Hospital, because it was just around the corner, and my wife Darci's instincts kicked in that this just wasn't right. (Our Doctor – Martin Cahn – told her on the phone, "You can come here... but if you're that worried, go right now to Children's").
So next, what happens is that your daughter is rushed up to the ICU – unconscious. And you sign a bunch of forms which give them permission to do everything and anything possible to save her life. They shoo you out of the room so you don't see them pricking and sticking your daughter with every tube and IV known to man - including one down into her heart. She's on a ventilator. She can't breathe by herself.
This photo was taken after the worst was over. I don’t have any from before then – it’s not something I wanted to remember.
Then, because her blood pressure is dropping – because she's internally bleeding out into every tissue in her body, as her blood vessels become porous in an attempt to get something – anything! – to the parts that are being attacked, the doctors dump massive amounts of drugs into her. Huge amounts of dopamine (possibly epinephrine – I'm happy to have forgotten most of this), to try to stop the blood plasma from escaping so much that her heart stops.
She's on forget-me-stick drugs too at this point. They're scrambling the memory-forming parts of her brain, so that if she does pull through, she won't remember the nightmare.
When that doesn't work, they start in on fluid resuscitation. We're still waiting for the lab results and blood work, so they can't do much – they don't know what it is, and in babies, giving the wrong thing can be as bad as not doing anything – but they have to do something. So they pump her full of saline so much that she becomes bloated. Her eyes swell shut, and she looks like the Michelin Man. Later she'll be bruised. She'll have dark circles under her eyes forever more after this. But her blood pressure is coming back up.
It's somewhere at this point in the proceedings that I become an expert in reading the medical instruments.
The results come back... it's bacterial. So now, they dump vancomycin into her system. This is industrial-strength antibiotics pumped directly via an IV straight into her bloodstream. It's highly acidic, and can cause lasting damage - but these are professionals, and they’re doing everything they can to make sure that my daughter doesn’t die right there in the bed.
And then, our vigil starts. Darci never leaves her side. I leave to sleep (there's only so much room in the ICU, so I drive the two or three blocks home and Darci sleeps there, or tries to), and come back the moment I wake up, after taking care of our dog.
Once the doctors knew that the antibiotics seemed to have worked, they started bringing her back out of it.
What most people don’t know is that ventilators are addictive. If you spend any time breathing using one, it takes time for you to recover. It takes time and effort to remember to breathe by yourself. It took a long time for Lexi to start breathing on her own again.
Eventually she did.
She was still out of it though. Bobbing in and out of consciousness, most of the time just under the surface of the ocean, occasionally breaking through as a wave brought her up.
This is when that picture above is from.
She’s still wired into IVs, in her arm, into her heart, and they start bringing her further and further out of the anesthetic, monitoring her closely. Fluid resuscitation … well, they’ve had to do that three times at this point, but it looks like she’s coming up.
The doctors don’t tell us that. They can’t. She’s not actually out of the woods yet. We won’t know that she’s okay for days – possibly years.
It’s day three of waiting on a knife edge. Or maybe day four. I can’t remember. At some point, I’ll go back through Facebook and pull out all of the posts.
At this point, I finally crack. So far I’ve been keeping it together, because I’m running on pure adrenaline. My mind has been completely clear. I have one sole purpose right now – and that’s to be there for my daughter, and my wife. It’s like Robin Williams in the early days – because it’s how I imagine being high on cocaine is, only more focused, more real, and more now. That, and my sense of humor has been firing a mile a minute.
But now, now Lexi wakes up enough… just enough… to be actually conscious.
Her first real words are “Eyes… Eyes Daddy! Eyes! Eyes!”
She’s panicked and scared. She doesn’t know where she is, and because of the fluid resuscitation, her eyelids are swollen shut. She can’t open them, and she doesn’t know why.
I burst into tears, and fall to pieces. She’s back… but there’s nothing I can do other than hold her hand.
Another night passes. Lexi is moved down to the general floor. She’s still on an IV – which has to be changed regularly. We’ve not been told she’s going to be okay yet – because they can’t tell us.
The first day on the general floor is weird. We didn’t know what to expect. All of my monitors are gone – all of the medical instruments – except some pretty basic ones. O2 sats? I don’t have that information any more. Internal blood pressure? No idea. I’m feeling lost – the monitors were the way I knew my daughter was alive, and they’re gone. I make do with the info I have.
The nurses aren’t always there either. They come by every couple of hours, and when they change shifts. I don’t know who to ask for things if we need them any more, and I don’t want to bother anyone for anything.
But at least Lexi’s awake. We’re sharing a room with another couple, who work in shifts. They can’t afford to both take time off work, so for the most part we see them one at a time.
We don’t know yet – because they can’t tell us. But she’s going to be okay. That’s part of the reason we’re on the general floor. She doesn’t need ICU care any more – just enough care to make sure that she’ll be okay if something goes wrong.
One IV change goes poorly; she ends up with it slipping inside her hand, not her vein, and her hand starts to swell up. We get that fixed, but she’s crying the whole time and scared as they do it.
Eventually, about a week after this all happened, it’s our last day. The new doctor coming on shift takes a look at Lexi, and her response is something that I’ll remember forever.
“Oh my god! She still has all of her fingers and toes!”
The kind of bacteria which caused Lexi’s illness is called neisseria meningitidis. It’s actually the kind of meningitis-causing agent which has the best prognosis. She kept her fingers and toes – mainly thanks to Darci getting to the ER at just the right time. She was tested for hearing loss – she doesn’t appear to have any that we know of, although that is another common outcome. She can hear! (And carry a tune).
Luckily, she also doesn’t have any brain damage that we know of. It’s a little too soon to know if she’ll have learning difficulties (she doesn’t appear to have any at all, so far, and now speaks Mandarin fluently for her age and is starting to read). It’s also too early to know if she’ll have ADHD – which is another possible side effect.
I’m not worried about any other neurological effects. A month after she was released from the hospital, we took her back for testing and she was fine. While we were in the hospital, I got the confirmation I needed. Darci was feeding her some soup, aeroplane style. I winked at Darci, and got her to feed it to me. Lexi burst out laughing at the incongruity of it all – Daddy, needing to be fed? By mommy? That was comedy gold.
Edit 11/27/2016 - Doing some exploring on an old hard-drive, I found a video of it :)
The laughter tells me she’s okay.
She came home. For a couple of months I had a sign in the window of our house saying “If you’re ill, go away! If you’re not, sanitizer is mandatory!” because Lexi’s immune system was on the rocks after its battle.
You might be wondering at this point why I’m telling you this story, and what it has to do with vaccination.
Well, it’s funny… because Darci was being a stay-at-home-mom at the time to raise Lexi (something I’m eternally grateful for, and can’t imagine how she was able to handle it, because it’s a lot of work), she needed something to do to keep her sane. So she joined 24 Hour Fitness in Northgate, near us. The plan was to go to the gym once or twice a week, and put Lexi in the daycare there while she worked out and swam.
The second time she did this, is when Lexi got ill.
Another kid in the daycare was infected with the bacteria, and it’s pretty contagious stuff. We found this out, because our next-door neighbor is a pediatrician, and she’d had to deal with a four year old boy with a similar story – the common factor between them being that gym. This isn’t the gym’s fault; kids are kids, and they’ll put all kinds of things in their mouths, and drool on everything, no matter how much you sanitize and clean things.
Unlike most parents in these situations, we know where patient zero was.
Now, think about this… we didn’t have Lexi vaccinated because there was no vaccine for this bacteria at the time. One would become available a few months later – too late for her. She was current on all of her other vaccinations though.
If she had been vaccinated with that unreleased vaccine, she wouldn’t have gone through all of this.
If the kids in the daycare had been vaccinated, they wouldn’t have spread it to her.
Now, think about the Seattle area. There’s lots of reports in the Seattle Times right now about daycares and other schools where parents are not vaccinating their children. They’re opting out for “personal reasons” and “religious reasons”.
This blog post is the kind of story that you get when there isn’t a vaccine for something. It’s also the very same story that you get when people don’t vaccinate their kids.
If you don’t vaccinate your child, do you really want to go through an experience like this? Where you spend a week in limbo without knowing if your child – the light of your life – is going to die in front of your eyes?
Even if you don’t, do you want it on your conscience that through your inaction, through your choices, you allowed another parent’s child to die?
If Darci hadn’t been so amazingly aware, if the timing hadn’t been so great, if the doctors and nurses at Seattle Children’s Hospital hadn’t been so on top of their game, Lexi would be dead today. It’s a wonder that she’s alive at all – being seen in that window of time in the ER – and that she didn’t lose fingers because we’d gone home with Tylenol, because with a lot of childhood diseases it’s hard to tell the difference between dying and sick.
If you’re on the fence about vaccination at all, consider our story. Vaccines are the best, most reliable safety measure out there. You’re more likely to die in a car accident on your way to work, than you are to have a child injured by a vaccination.
Don’t be an idiot. Get your kid vaccinated. If we could have with Lexi, we would.
If you’ve read our story, and would like to donate to Seattle Children’s Hospital, to help the hospital cover medical bills for parents who are less fortunate than you, please visit this link: http://www.seattlechildrens.org/ways-to-help/donate/ – it’s well worth it, and most companies will match your donation. If you can’t afford to give a monetary donation, please consider donating your time or help to them. You can find all of the information you need here: http://www.seattlechildrens.org/ways-to-help/ . Seattle Children’s Hospital is a magnet hospital which serves children in the states of Washington, Alaska, Montana and Idaho, and regularly airlifts children to the hospital in emergencies. It’s literally the best care for thousands of miles, and we were lucky to have them right on our doorstep.
I wish I had the contact info for our doctors and nurses so that I could thank them personally.
Also, thank you to Dr. Martin Cahn – who called the ICU pretty much every hour during that first night, all through the night, and then during the days after to check in on our daughter. There are few doctors on this planet with the same level of dedication and devotion to both the practice of medicine and his patients as Dr. Cahn.
Simon Cooke is an occasional video game developer, ex-freelance journalist, screenwriter, film-maker, musician, and software engineer in Seattle, WA.
The views posted on this blog are his and his alone, and have no relation to anything he's working on, his employer, or anything else and are not an official statement of any kind by them (and barely even one by him most of the time).