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The Haze of Uncertainty

The haze of smog has dissipated over the Baltimore skyline from our ninth-floor window in the pediatric ward at Johns Hopkins Hospital. I can see the harbor and the bridges, the red brick buildings that line the streets of Washington Heights, Fells Point, and Little Italy. Baltimore may not have glowed apocalyptically orange like New York City, but you could smell the smoke outside and see the ash settle on every surface. We don’t know yet if the haze of Canadian wildfire smoke will blanket the city once again; it simply depends on which way the wind blows.

This unprecedented wildfire consuming Quebec and reverberating through the east coast and midwest of the United States is a perfect metaphor for what we’re experiencing with Maggie today.

Maggie’s hospital staycation 2023 started on June 1st with a trip to the emergency room at Anne Arundel Medical Center, medically transported to Johns Hopkins due to seizure complications, and the emergency room team saved Maggie’s life from septic shock. We spent a few days in the Pediatric Intensive Care Unit before being transferred to the Pediatric ward. Maggie is, more or less, over pneumonia and septic shock. I think (but am unsure whether) she’s fully over the strep. The parainfluenza (which I’m told is one of the viruses that cause common colds) has been the most difficult to shake. Medically speaking, there are other unexpected complications that we are exploring and treating including gastro-intestinal and abnormalities in her blood like low platelet counts and so on. Then there are the seizures, which required rounds upon rounds of rescue medications and nearly every attempt to taper those interventions cause a boomerang round of clusters which requires another round of rescue medications on top of her baseline seizure meds.

When we are ultimately discharged from Johns Hopkins, Maggie will not be going home. This whole experience has weakened her tremendously and Maggie has regressed on numerous skills she had previously mastered. On a good day, Maggie can not only walk, but she can run and climb. She’s an explorer. She can normally eat independently (although doing so with utensils is another story). She cannot walk independently right now, but damn it, she wants to. When we took her out of the Posey bed for physical therapy and she realized that she was unable to get up, the look of frustration on her face screamed, “This is BULLSHIT! Why are my legs not working?!?” Seeing a toy that she wanted on the other end of the room, she stopped trying to pull herself up and simply army-crawled to her target with a speed that honestly astounded me. This tells me that she is motivated to physically improve when motivated.

The good news is she’s not going to be learning new skills. What she needs is to rebuild the baseline strengths to reach her goals.

This afternoon, Maggie was discharged from Johns Hopkins and admitted to the Kennedy Krieger inpatient rehabilitation hospital. Maggie has already shown incredible gains from the first day when she could hardly sit independently. She can pull herself up to stand, but standing and walking attempts nearly always lead to her toppling in one direction or another, likely due to poor core strength, low muscle tone, and balance/coordination issues. To address feeding, Maggie has an NG tube (nasal gastro tube). The goal is for her to not only eat independently but to simply eat. Her food strike and refusal to eat even her previous favorites have gone on long before this medical crisis. There are more regressions, but those two are by far the most important.

To address the slew of regressions, Maggie will begin therapies tomorrow. On Thursday, the therapists will have had enough time to see her progress and make a tentative treatment plan with an estimated discharge date. All of these plans are fluid, and subject to change based on Maggie’s improvements and progress. The truth is, we don’t know how much longer we will be in Baltimore, we don’t know how many therapies Maggie will need, and we don’t know where she will be at discharge with respect to skills once she has completed her treatment plan or even the details it will entail. All I know is tonight, it is raining in Baltimore, and once again, the buildings outside of our window are covered in a haze, but this time, it’s precipitation that fills the air instead of the downwind ash from fires. At least this haze of uncertainty is certainly less terrifying than the orange hue of uncontrollable wildfires. At least our haze of uncertainty today is more a matter of logistics than life or death.


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