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The Perfect Storm


I just finished writing and sharing my memoir, Magnolia in November, with a number of friends for feedback. (If you would like to read it, please message me). I finally got to a place where I could not only write and talk about Maggie’s condition with a sense of emotional detachment, by which I mean talk about it without crying. Maggie was getting better on a number of levels, most notably her personality was beginning to emerge. In so many ways, she was beginning to blossom.


If I had any idea that I would be writing this post from the Pediatric ICU, I would’ve waited. Woulda, coulda, shoulda, but I didn’t, because I had no idea that a perfect storm of conditions and complications would land us here, and as I furiously type into my laptop, what I feel is not the calm acceptance I embraced in my closing chapter. No. What I’m feeling is a befuddling combination of rage and disbelief.


Seriously, God, WTF?

It started with a fever coupled with Maggie refusing to eat. She’s definitely been a picky eater and we have been back and forth to the doctor so many times about it, it’s simply a chronic challenge which I know is a common issue with children who share her conditions (Lennox-Gastaut Syndrome, autism, pica, global developmental delays, and sensory processing disorder). A fever, refusal to eat, and a positive strep test fit. Of course, she doesn’t want to eat with a sore throat! Who would? But she got worse. Her fevers spiked. Her breathing was erratic. She was getting so much worse.


At the emergency room, not only did we confirm strep, but she also tested positive for parainfluenza, pneumonia, and x-rays showed an extreme case of constipation. This spiraled into a spiking fever, hypotonia, crashing oxygen levels, a serious drop in blood pressure, erratic heart rate, cluster seizures, and I’m not even sure what else.

In Magnolia in November, I described watching a medical ballet in a neighboring room when Maggie and I were in-patients at the hospital to initiate the ketogenic diet:

One night at the hospital, an alarm started going off, a constant droning da-dum-da-dum. I left the room. I couldn’t sleep. Even if I could, the alarm would keep me up. Earlier, I think what woke me was the screams and cries of a child in another room. I walked out of Maggie’s hospital room. There was a massive amount of doctors, nurses, and other medical professionals crowded inside and outside a neighboring room. I stood there, entranced. What was happening? I was noticed and asked, “Do you need anything?” I shook my head no, but stayed, watching. Someone else came up, “Do you need anything?” I asked, “Is that child going to be okay?” “I can’t release any information. If you don’t need anything, why don’t you go back to your room?” So I did. A worried mommy looky-loo couldn’t help.

What was I thinking, as I watched the dance of nurses and doctors, circling this child’s bed? What was I thinking, as I observed the steadfast focus of this medical team, oblivious to the da-dum-da-dum droning of alarms? “Megan, turn off the alarm,” one of them said while I was still in the hallway, motioning to me.

I had stood, entranced. I knew I didn’t need to be there, to watch whatever was going on. My presence was invading someone’s privacy, invading their workspace and decision-making. I didn’t know. That’s the part that glued my feet to the ground. I didn’t know what was going on, but a part of me imagined watching this medical ballet from afar, imagining Maggie in the center of it all, and me, watching helplessly from afar.

Da-dum-da-dum rings in my ears, the gentle, jarring droning of the alarm still ringing even if it’s off.

“Do you need anything?”


Yes, I do. I need to know that my daughter is going to be okay. I need to know that I won’t one day be standing in the hallway of a hospital ward, watching helplessly as medical professionals seamlessly dance around my daughter. I think of God, His sacrifice of His only son. I am not God. I cannot sacrifice my firstborn. I will fight and do whatever she needs to have her best chance, her best life. I will sleep with her in the tent, I will rock her, and I will love her every day with everything I have in me. I need to know that my Magnolia flower will blossom, that she will be happy, that she will have a life free of debilitating seizures, and that she will one day find her voice.

When I wrote this, we had not personally experienced the medical ballet of doctors, nurses, and other medical professionals circling Maggie’s bed with needles, tubes, oxygen masks, and so many machines. I’ve watched this similar scene in too many hospital staycations, but we hadn’t experienced it ourselves.


What was I thinking, as I watched the dance of nurses and doctors, circling my child’s bed? What was I thinking, as I observed the steadfast focus of this medical team, oblivious to the da-dum-da-dum droning of alarms?

“What’s wrong with my daughter?” I asked.

“The medical term is shock,” one of the doctors said. “She’s likely septic, too, but we’ll know for sure after the test results come back.”


Shock. Tests confirmed later, yes, she was septic. Shock. Shock and awe. Shock and a befuddling combination of rage and disbelief.

Seriously, God, WTF??


What I am grappling with right now, the shock and disbelief that I’m feeling right now is the realization and recognition that if we did not go to the emergency room, Maggie would have died at home. Hell, she could’ve died here. She almost did.


I want to say that the most dangerous phase is over, that she’s out of the danger zone. I want to say that so badly, but the best I can say is she’s stable right now. We’re going to be in the Pediatric ICU for however long we need to be. My hope is that the perfect storm of compounded viral and bacterial infections, the seizure electrical storm, the fluctuating temperature, and everything else going on in her is going to be fine. I hope so. I pray so. But that doesn’t erase the fear, rage, and shock of it all.


Seriously, God, WTF???


*****

Day 5: We are transferring out of the Pediatric ICU today. Every day, Maggie shows marginal improvements. As long as she continues to improve, then that's the best we can hope for. She is out of the danger zone and for this, I thank God.

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