How My Daughter’s Mystery Illness Gave Me Pronoia

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Pronoia / via

A few days ago, I saw this on my Facebook feed:

My new favorite word is Pronoia (the opposite of paranoia). It’s the belief that everything in the universe is conspiring to support you.

Apparently, pronoia is a newly coined word that describes a lovely, though slightly delusional, belief that the world is out to help you. It was posted by a much-admired master coach and teacher, and it resonated deeply with me that day.

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You see, I’m currently enveloped in this feeling of pronoia. The word expresses the gratitude I feel, the connectedness I feel to the communities that supported me, and the resolve I felt at the end of the ordeal to pay back and pay forward after a mystery illness my daughter suffered this Fall. Seeing this post made me wonder what I might do with this feeling, and how I might expand on it so others may benefit also.

THE PUNCH

This summer was my favorite summer ever. I managed to put together a fun, affordable mix of summer camps for my kids. I cleared my work schedule a bit to make room for sleepovers and water balloon fights. There were many afternoon play dates that turned into pizza dinners and movie nights. We chased fireflies at night. It was the kind of summer I dreamed of having with my kids one day.

Then September 1st came and punched me in the face.

My six-year old daughter suddenly fell sick, writhing in acute stomach pain and with a dangerously high fever.

My kids, thankfully, are normally not sickly. We barely have any medicine in the house. I would have just kept her at home, but my husband, a physician, said stomach pain is not something that can be messed with, and that we (meaning “I”) needed to take her to the doctor in the morning.

I have to confess that I was unreasonably upset about having to cancel all my clients that first day. Having just returned from vacation, I had five sessions and one coffee meeting scheduled, with babysitting all taken care of. I was ready to get back to work. We were all supposed to go back to our regularly scheduled activities. As the doctor’s visit turned into an emergency room visit, and the emergency room visit turned into a hospital stay, she got sicker and sicker. My early thoughts about her illness messing with my work schedule turned into mother’s guilt.

The first seven days in the hospital went by with my daughter still bowled over in pain, still with 104-105 degree fever. I found myself asking the nurse for more morphine for my six year old, something I never imagined myself doing. Each incorrect diagnosis came with different medicine and with renewed false hope that we would be able to take her home shortly.

TEAM CAROLINE

A community pitches in to help. / via
A community pitches in to help. / via

I have a group of friends and advisors I call Team Caroline to help me through various challenges. Because this ordeal involved my child, the folks that were most helpful were my neighborhood mom friends and my own mother. These women scooped up my son, the healthy one, and took him on all day play dates, made him do his homework and brought him home at bed time. One family offered to take him into their house until my daughter got out. People were clamoring to cook for us and many offered to relieve me from my hospital duty, though my daughter wouldn’t hear of it. Thanks to these mothers, all of whom I know to be swamped with their own demanding lives, I was freed up to take care of my daughter 24/7.

My funny, sweet, spunky daughter was in pain all day, swollen, sallow, feverish and angry. When the doctors cheerfully greeted, “good morning, princess!,” she growled back, “I’m NOT a princess!” Then she got depressed. She would just cry. To cheer her up, two mothers brought their precious daughters to our “isolation” room, suited them up in hospital gowns and gloves, and sat with us. Two sets of two brothers showed up with party bags filled with little treats. I saw my daughter’s eyes light up though the pain. These friends will be on my daughter’s team, I thought.

CROWDSOURCING THE DIAGNOSIS

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The seventh morning was my lowest point. I had spent another completely sleepless night watching my girl being sick. I could no longer lie to her and say we were going to go home soon, though I fantasized about signing her out and taking her home. They didn’t know how to fix her anyway. Then I received a text from a close mom friend saying: “Beth A. wants to know if you’ve looked into something called Kawasaki disease. Her daughter had it.” I read through all the symptoms. Some of them overlapped with my kid’s, but not all.

Hospital IV BagsKawasaki was still on my mind when an infectious disease specialist, who was not one of our main doctors, mentioned that some of her symptoms seemed to match up with something they had not yet considered. I blurted out, “Is it Kawasaki disease?” It was. She discussed it with our regular doctors, who immediately and strongly dismissed it.

But now a seed was planted in my mind. My husband and I read up on the illness. My husband tracked down a long-lost pediatrician friend from medical school. She spent more than an hour with him on the phone, reviewed our notes and photos, and concluded, “It smells like Kawasaki.” I spoke with Beth, the mother who mentioned the disease to a mutual friend. Her daughter’s doctors had not diagnosed it correctly either. In Beth’s case, her sister-in-law, another physician, helped them figure it out. She urged us to be pushy and to seek out the IVIG treatment for Kawasaki immediately. Kawaski disease is the number one cause for acquired heart disease in children, and these treatments need to be delivered within the first ten days of symptom onset to try to avoid permanent heart damage. We were going into day 8 of my daughter’s mystery illness.

Her symptoms were confusing and out of order. She also developed infections during her hospital stay, making things even murkier. Our doctors, whom we still love and respect, truly did not believe Kawasaki was what she had. But my husband and I did, so we began a full-on negotiation and battle to convince them, and they agreed to administer IVIG in the middle of the night.

THE MAGIC POTION

The cure for Kawasaki is intravenous gamma globulin (IVIG). It’s produced from the plasma of donated blood from 1,000 donors. The clear liquid comes in a giant clear glass bottle, and is administered over several hours through an IV needle. My husband and I yelled for immediate treatment, and she began receiving it around 1am.

Over the next 7 hours so, her fever went from 105F to 97F. Swelling gone, you could see that she had lost weight. All other symptoms simply disappeared. She woke up and declared, unprompted, “My belly doesn’t hurt anymore!”

Thankfully, everything turned out OK, even without Dr. House's help.
Thankfully, everything turned out OK,
even without Dr. House’s help.

I imagine this is how the parents of Sleeping Beauty felt after seeing their daughter get up like nothing happened. It felt like a fairy tale and an episode of House rolled into one.

Kawasaki had made my daughter’s legs limp and unable to hold up her own weight. We had not even seen her sit up for days. Now she was eager to try walking. As my husband and I helped her take her first steps, we recalled a video of a calf walking for the first time. Nudged by the mother, the babe would get up awkwardly and stumble with her legs crossing. Then she would get up again, and begin walking, until she fell again. That’s exactly how my daughter got up from bed and started walking. She was discharged the very next day with the final diagnosis of “Atypical Kawasaki.”

NOW WHAT?

I know that there are so many children suffering from truly terrible diseases, and their parents are forced to stand by and watch them suffer. My daughter’s Kawasaki is so insignificant in comparison. But for me, it meant something great.

In order for my daughter to get through this ordeal, to be diagnosed and to heal, every single person mentioned in this piece played a significant role. I believe God sent every single one of them my way. The mothers who reached out, the friends who visited, the ladies who took care of my son so I could be with my daughter and document everything, my husband’s old medical school friend, the doctor who mentioned Kawasaki, the nurses, the doctors who engaged us and listened to us, and oh gosh, the one thousand people who donated their blood so my daughter could be cured.

What if these people did not step up and make their presence felt? And what if my husband and I were not educated people whom the doctors could feel good about listening to? What if we were more like our immigrant parents when we were growing up: tired, worried, disheveled small business owners with limited English, just hoping and praying that the doctors would save their kids?

Maybe things would have turned out differently. Or maybe things would have turned out the same. For now, I clutch my daughter. I know things are back to normal because my kids have begun fighting again.

Beth, the mutual friend (now my good friend) who brought up Kawasaki first, said of her early hesitation to contact me: “I didn’t want to be another nosy Jew…” I feel so thankful and so lucky to have this “nosy” friend, and everyone else who showed up. I have a severe case of pronoia these days, and while I may be delusional, and definitely indulgent, maybe I’m on to something here. Maybe in order to create the kind of world that supports us all, the kind of world that leaves no one behind, we have to reach out and stick our noses into other people’s business more often. I vow to get out there and be nosy too. I vow to worry and care about others. I vow to advocate for those who can’t advocate for themselves. And to donate blood.