Removal and Refurbishment 

“The question

isn’t who is

going to let me; it’s who is going to

stop me.”

– Howard Roark

---

Nora is in the hospital. She has been throwing up for almost a week, but now she’s coughing too. She has a lingering virus and a UTI. Here are a few things we’re doing: Zofran around the clock, antibiotics, medication to help her stomach mobilize, Tylenol, labs, occasional x-rays, chest vest therapy, inhaled medications, feed adjustments, IV fluids and family conferences with her medical providers. 

She’s trying to heal, but it’s been hard. You see, since the start of 2023 (and even a little before) she has had a few more ambulance rides, been in and out of the hospital, pediatrician’s office, outpatient laboratory, clinics, and the emergency room. Lately, when she is sick, or needs significant support at home or while inpatient at the hospital, it seems to take her longer and longer to “bounce back” to her full strength or endurance level. Part of this is living with chronic illness and a rare disease, but I’m told part of this also has to do with circulating 2023 viruses in the community and their impact on children with medical complexity.

Today, this admission, we are sequestered to a part of the hospital that, during the first days of the pandemic, was outfitted to accommodate an influx of patients with Covid. The glass door, which is built to open to a spacious community patio with sunshine and brightly colored furniture, was boarded up with cardboard to support HEPA filters. As picturesque as this sounds (she said sarcastically) it’s really the yellowing blinds sloppily hanging on and around the cardboard and filter tubing that renders the entire scene offensive, or at the very least, off- putting in any Covid-ready room. 

The confusing part is this: even with the loosening of Covid procedures in most medical settings, the blue surface shields remain taped over the door of each room, disabling patient access to fresh air, sunshine and the cheerful patio. On days four and five of Nora’s hospitalization, something about her constant vomiting, mine and Tyler’s helplessness to ease her discomfort and help get her home, or the ongoing seizures, the feeling of “overwhelm” that had settled in my chest, and my overall frustration with pieces of Nora’s medical care led me to consider what it might be like to simply rip away the cardboard HEPA filter for a long inhale and an even longer exhale of fresh air.

Soon I was imagining what it might be like to have a breeze pass through the hospital room to possibly ease Nora’s nausea, or what it might be like to have a little sunshine in the morning to set the tone for the day, or maybe even hear birds singing in the courtyard. 

For 48 hours I pondered the idea of removing the beastly HEPA cardboard. Sometimes I pondered out loud with the medical professionals popping in and out of the room (all of whom either gave a subtle blessing or clapped their hands over their ears) or silently and I puttered around the room in an attempt to calm my anxiety. 

I imagined liberating the door, swinging it open on its hinges far and wide. I imagined it might transform Nora’s space from a below deck pit to a top deck paradise. I wondered if it might help her nausea, her healing and her spirit—- in the off chance that it would contribute to her comfort and all our mental and physical wellness I eventually determined it was worth it. 

And so, because I didn’t know exactly what I was doing, I rearranged our room to create space for removal and refurbishment. I heaved the massive HEPA generator against the wall of the hospital leaving a crack wide enough to also wedge the cardboard shield. I carefully followed the edges of the tape and ripped, one tear at a time, the cardboard from the doorframe and eventually secured the cardboard and massive plastic tubing against the wall before I let out a cheer and exclaimed to Nora, “Freedom!! Nora, do you smell it? That’s fresh air girlfriend!!”

I’m sitting now, in the sunshine at Nora’s hospital bedside, near the open door; a cool breeze passes through the room rustling wisps of Nora’s hair. She’s healing; she is, I am, we are.