The parent of a ventilator-dependent child reflects on corona pandemic
Very soon we started to feel like caged lions. There were days when I felt like if I didn’t scream or cry out loud, I’d go crazy, but I knew I had to keep my composure for Dor.
By MEITAL BONCHEKLAST AUGUST, 15-year-old Dor experienced organ failure as a result of sepsis. (photo credit: Courtesy)
‘I’m sorry, you won’t be able to take your son home for Purim. COVID-19 is spreading, and we can’t put him at such risk,” said Dr. Eliezer Be’eri, director of the Respiratory Rehabilitation Department at ALYN Hospital, the day before the holiday.I looked at my husband, Yehoshua, in astonishment. Dor had been hospitalized for six straight months, and this was to be his first visit home. We’d already organized wheelchair-accessible transportation and prepared the entire extended family for his arrival.We had been on an emotional roller coaster, but this moment was the most crushing of all. We were facing a new, frightening reality; we were now the parents of a ventilator-dependent child in the corona pandemic.Our journey, however, began long before the corona crisis. Last August, our 15-year-old son Dor experienced organ failure as a result of sepsis, bacteria that penetrated his bloodstream. Dor had to be resuscitated and overnight became a ventilator-dependent child with a severe brain injury, totally dependent on long-term care.For two-and-a-half long months my husband and I sat by Dor’s side in the Intensive Care Unit of Hadassah Hospital, trying, but not really succeeding, to stay sane among all the terrifying, beeping machines, the strong smell of hospital disinfectant, and the long nights full of worry and dread. My mood fluctuated by the hour. A positive comment by one of the medical staff and I was ecstatic, a negative test result and I was dejected. Ever so slowly, the picture became a bit clearer: The situation was extremely severe but there was hope.We moved from Hadassah to Jerusalem’s ALYN Hospital Pediatric and Adolescent Rehabilitation Center, which operates the only department in Israel specializing in pediatric respiratory rehabilitation. We felt fortunate to have been accepted by this one-of-a-kind facility, and we quickly entered a routine of intensive rehabilitation therapies that included occupational and speech therapy, respiratory physiotherapy, music therapy and animal-assisted therapy.In between sessions my husband and I used all our available resources to ensure Dor would regain full consciousness. We performed exercise and stimulation activities. We recruited Dor’s favorite artists – Ishay Ribo and Eliad Nachum – to perform at his bedside. We showed him video clips of friends and family members. Dor made slight progress but was a pale shadow of the boy we knew. Yet we were determined to bring him back. We refused to accept this fate.In the chaos we managed to develop a routine. Our entire extended family offered support, taking turns staying with Dor so my husband and I could see our three younger children – Roni, Shir and Alma – who missed us greatly. And then, when we had finally developed a semblance of stability, the ground beneath us started to shake.ALYN went into COVID-19 mode and made a dramatic decision. In order to safeguard the ventilator-dependent children, the Respiratory Department would need to be completely isolated from the rest of the hospital. From then on, the department would become a totally isolated and independent unit.HUNDREDS OF thousands of shekels were invested in erecting new walls, laying down communication lines, outfitting new rooms, and installing new oxygen points and monitoring systems. The staff worked night and day, and before we could even digest the changes, in just three days, we were completely isolated.Visitors were now off-limits, and only one parent was allowed in at a time. Moreover, the parent could not leave the premises for a full week before trading places with their spouse. I remember these days as being full of distress and conflicting feelings. As parents of ventilator-dependent children we were very afraid of the coronavirus threat. We were grateful that ALYN was taking these necessary extreme measures to ensure the safety of our children, but the realization that we were alone was shocking. How would we cope without our families without the mutual support of the other parents at the hospital?Very soon we started to feel like caged lions. There were days when I felt like if I didn’t scream or cry out loud, I’d go crazy, but I knew I had to keep my composure for Dor.ALYN’s incredible medical staff worked tirelessly around us, doing their very best to keep our spirits up. My anxiety, however, continued to build and I had no way to channel it outward. My experience as an activist led me to think about practical solutions that could help me and other parents.I spoke to one of the leading physiotherapists at the hospital, Itai Schurr, about creating a fitness plan to manage stress that could be implemented at the child’s bedside. He was immediately on board. The idea turned into a dream of developing a complete fitness kit, a gift to every parent in the respiratory unit. Beyond its significant benefits, it would also help to acknowledge the difficulty and unique needs of parents like me.At the entrance to ALYN Hospital there is a picnic table amid beautiful greenery and abundant shade. I would often go there for refuge when I needed to cry. Oshrat Levy, whose 11-year-old daughter Maya also suffers from brain injury, would often join me.“In a certain way we are like agunot [women chained to marriage],” Oshrat noted poignantly.“It’s true,” I told her, “We’ll probably always be waiting for the child we once knew to return, but they never will.”My dreams reflect this painful process of internalization and acceptance. In the beginning, I dreamt about Dor as he was before the injury: walking, speaking and laughing. In the dream I would say to myself, “Wow, it’s a miracle! He’s back to normal!” Then I’d wake up shattered. Recently, I began dreaming that Dor’s personality was restored but he was still in a wheelchair.Between hopes and dreams that come true and are then shattered, in the corona reality and beyond, we will continue onward with our chins up. Together with friends, family and the best medical rehabilitative care available, we promise our son the brightest future possible.The writer, a Ma’aleh Adumim resident who is married to Yehoshua and is the mother of four amazing kids, is vice president of the Briah Fund, which promotes women’s rights in the healthcare system. Meital@briah.org
