“The wind blew my eyes off my face and I caught them in my hand,” my son declared, pointing to his pre-school art project. The assignment was to glue a hat, pants, shirt, mouth and eyes where they belong on a pre-drawn outline of a human body. The hat was where you would expect it, as were the mouth, shirt and pants. But both eyes were glued to the left hand.
“Wow, that’s poetic!” I replied, and wrote down the quote at the bottom of the paper with his age, “2 and a half.” Then I taped the masterpiece to his bedroom wall.
A week later he had a seizure, which turned out to be the first symptom of autoimmune encephalitis. His body had produced an antibody that broke the blood-brain barrier and attacked his brain. Within weeks our son was dependent on a ventilator, a tracheostomy, a gastrostomy tube, a pacemaker, and several IV lines pumping multiple medications into his veins. For the next 15 months, we lived in three different hospitals. After 10 months on the brain-injury unit of the third hospital, we were informed that, due to insurance denials based on our son’s progress in rehab, we needed to either transfer him to a long-term-care facility or provide hospital-level care at home. Our decision was clear: Our only child was coming home.
Prior to 1981, providing hospital-level care at home was a virtual impossibility. Due to insurance practices and Medicaid regulations, children with critical medical needs were required to live in hospitals or long-term care facilities. Inspired by the plight of Julie and Mark Beckett, parents who lobbied to take their three-year-old daughter Katie home after she had spent most of her young life in hospitals, then-President Ronald Reagan made a significant policy change. Katie had contracted viral encephalitis as an infant, which left her partially paralyzed and dependent on ventilator support. Reagan bemoaned both the bureaucratic regulations and cost of the healthcare system that required children to stay in hospitals when better, more efficient, less expensive care could be provided at home. After considerable advocacy by her parents and doctors, Katie became the first child in the country to receive a waiver from the government to receive Medicaid-funded, hospital-level care at home. Since the inception of what is now known as the Katie Beckett Waiver, more than half a million families have gotten waivers to provide hospital-level care at home to their children.
Becoming one of those families requires parents to learn a vast array of medical, nursing, administrative, advocacy, rehabilitation, custodial, and systems-analytic skills—skills typically divided among thousands of hospital employees. Before leaving the hospital, we needed to prove that we could manage our son’s care. We had to demonstrate that we could administer all of his medications through his gastrostomy tube. We had to go to a pharmacy to fill all of his prescriptions and bring the filled prescriptions to the hospital to be checked by a doctor. The pharmacy had to be able to convert the medications that were not available in liquid form into something that we could administer via my son’s gastrostomy tube. (This is a “compounding pharmacy,” a term I had never heard before.) We needed to show that we could set up his feeding pump, prime the long plastic tubing, set the appropriate rate at which his liquid meals would be delivered, connect tubes to ports, and clamp and unclamp lines. One month before his discharge, our son was stable enough to have his tracheostomy removed so we would not have to change or suction a trach or work the various vent settings.
On paper, we seemed like ideal candidates for the challenges ahead. My husband was a pediatric nurse practitioner in a Bronx emergency room and had prior experience as a critical-care nurse. I used to run an organization that trained principals for New York City public schools and had a vast network of special educators among my colleagues and friends. Between the two of us, we had substantial experience working in the large, complex bureaucracies of healthcare and education. Still, we were terrified to take our son home.
He had not regained basic functionality and was nowhere close to his former walking, talking, and eating-by-mouth self. While in the rehab hospital we had watched four other children with the same diagnosis make substantial recoveries, each walking out of the hospital with no obvious traces of the disease. We were exhausted and heartbroken that after so much time our son had still not recovered. But there was no time to indulge those emotions. We had serious work to do.
Turning our two-bedroom rental in upper Manhattan into a medical facility required considerable creativity. We needed to declutter our home full of toys, books, musical instruments, and art supplies to make room for our newly medicalized lives. My mom flew in from Michigan to reorganize what she could, and give away things we could no longer use. There were deliveries of equipment and supplies—a hospital bed, a bath chair, a stander, a suction machine, a pulse oximeter (to monitor our son’s oxygen levels and heart rate), and a wheelchair—most of which were not delivered until well after we were back home, due to insurance approval processes and the dysfunctional market of medical equipment providers. We needed diapers, and they were bigger and bulkier than they’d been when he was a baby. We needed monthly supplies of gloves, feeding bags, cans of Pediasure, and syringes. In an apartment with only five small closets, we needed a hospital stock room.
Then there was the staffing. Our son’s care required a constant flow of nurses, therapists, and teachers, sometimes making our apartment as full as if we were hosting weekend brunch on a Tuesday afternoon. I made several calls to find a physical therapist, occupational therapist, speech and language pathologist, vision therapist, and teacher who would provide the necessary services at our home. We had given up on privacy in the hospital with all these people coming in and out of our room on unpredictable schedules, but it was another level of privacy loss to experience so many people in our apartment. My husband and I took turns hiding in our bedroom on the days we were both home, to get a break from all of the people our son needed but whom we did not particularly feel like seeing before we had an opportunity to bathe and get dressed.
Frustrated with the lack of support we felt from our initial group of nurses, we developed a relationship with the nurse-practitioner training program at the local university (my husband’s alma mater). All RNs studying to become nurse practitioners, our nurses (whom our insurance company’s in-network agency agreed to hire) were smart, dedicated, and completely inexperienced. We joked that we had become a teaching hospital. Some of our nurses told us that they learned more from our son than from most of their clinical-training opportunities.
As with any work environment, there were clashes between the staff, scheduling conflicts, holiday- and cold-season staffing woes, and legitimate human error. To avoid the consequences of these typical work dynamics on our son, my husband and I developed standard procedures for drawing up and administering meds, transferring our son from wheelchair to exercise mat, and keeping stock of our inventory of medications and supplies. We installed a video monitor in his bedroom and a master schedule for everyone’s comings and goings.
Prior to my son’s illness I had run an organization with 60 employees. I prided myself on being open and collaborative and encouraging of different points of view. At home I was overbearing. Depleted from the extremely long hospitalization, and traumatized by seeing my son with this dreadful illness, I found myself resenting all of the people who were there to help us care for him. I did not want them in my home. I did not like being interdependent with so many people just to keep him safe. I did not want the stander and wheelchair in my living room, the bath chair in my shower, or the sounds of the churning pump and the pulse oximeter's alarm. I did not want to tell everyone who walked through my door to wash their hands and I was tired of the smell of Purell on mine. I did not want to spend my time making phone calls to insurance companies and doctors’ offices and billing departments and medical-supply companies. In short, I did not want to run a hospital. Most importantly, I did not want my son to suffer for even one more day.
But there was no choice. After hearing a nurse refer to my son’s bedroom as “the nurses’ room,” I went about reclaiming our space as our home. It was time to start making our days as joyful as they could possibly be. I played upbeat music, cooked delicious meals, and rearranged the living-room furniture so the new equipment could be tucked away when not in use. I accepted the messiness of our bedroom and the excessive recovery-related clutter of our living room. I took down some of my son’s old artwork (which had started to feel like a shrine to his pre-illness self) and put up new projects he and his home-based teacher had worked on together, her hand guiding his. His walls began to change and evolve as he did, showing his growth and progress and recovery.
He now attends a wheelchair-accessible neighborhood school, accompanied by a nurse at all times. Nurses continue to work overnight, but there are several hours each day that we are home, just the three of us, a family. He is still non-verbal. The feeding pump continues to churn. The pulse-oximeter alarm goes off far less frequently. He takes much less medication. Although the broken systems of supplies and insurance persist, we have figured out how to navigate them with our senses of humor intact, most of the time. I wonder if our son would have made as much progress if he were living in a long-term care facility. Home is a medicine unto itself.
I still have not taken down the preschool art project of the human figure with eyes on his hand from my son’s bedroom wall and I may never do so. It is one of my favorite things in the entire apartment. I love the metaphor of the wind blowing our eyes off our faces, and us proudly, wearily, and resiliently catching them in our hands.