A Parent's Perspective
Reflections by Sue Wegman
The Golisano Children's Hospital will soon be opening its doors to the public. I would like to take this opportunity to share some of my hospital experiences with my son, Brendan, and the changes the new hospital will bring.
Several years ago I was asked to be on the Parents Advisory Council (PAC) for University Hospital. Unlike most parents on the council, I was not a frequent flyer; however, what I lacked in regularity, I made up for in intensity. My experiences with Brendan were in the NICU, PICU and Emergency Room. It was those experiences that I referenced when making recommendations to the PAC and the Children's Hospital.
The experience of having a child in the hospital will never be like staying with your child in a hotel room. Still, it is often the little things that make a difference between a horrible experience and a tolerable one. The new Children's Hospital will have many amenities that I wish were available years ago when my son was hospitalized.
The most obvious amenity within the Children's Hospital will be that all patient rooms will be private and provide comfortable sleeping arrangements for parents or other adult family members. Between the ages of 2 and 8, Brendan experienced frequent bouts of croup. On one particular evening, his croup progressed to the point where he developed cyanosis, an oxygen deficiency that causes a blue discoloration of the lips and fingers. My husband tried steam therapy as I called the ambulance. Fortunately, it arrived quickly; I had just enough time to throw on some clothes and grab my purse before going to the hospital. After several hours in the emergency room, the doctors were still unable to stabilize Brendan enough to send us home. He was then admitted to the hospital where I spent the rest of the night in a recliner next to his bed. When the Children's Hospital opens, the time spent in the emergency room should be shortened since less time will be spent shuffling patients from one room to another. Additionally, parents will no longer have to sleep in a recliner; the family sleep areas with various types of pull-out bedding in each room should allow parents the opportunity to rest more comfortably.
Perhaps the most traumatic hospital experience for us as a family occurred when we discovered that Brendan had subglottic stenosis – a narrowing in his trachea just below the larynx. Brendan had an adequate but marginalized airway, so we were unaware of his condition until his breathing became impaired and he was scheduled to have his tonsils and adenoids removed in an attempt to improve his breathing ability. The surgery went well but, in recovery, Brendan's trachea began to swell. Because Brendan's trachea was already marginal, the swelling compromised his airway. He spent 5 days in the Pediatric Intensive Care Unit – most of it on a ventilator. This diagnosis was both unexpected and upsetting; yet, there was no place where I could be alone to process this information. The new Children's Hospital will have quiet space where families can go to meditate, pray or cry when the need/desire arises. There will also be a family resource center where families can learn more about their child's condition and access available resources.
Nonetheless, even the most well appointed hospital cannot take the place of home. Hospital staff cannot take the place of a nurturing parent or parents, nor can they alleviate every family's anxiety. I was fortunate to have my own support system to help me when Brendan was in the hospital. This support system consisted of various friends and family members. My sisters came to the hospital to take me out to eat. One friend did my laundry. My mother watched my older child. My son's scout leader made lasagna for my husband. All of these things helped, and I learned that friends and family do want to be helpful but often don’t know how. Parents need to communicate what it is they really need. For families without similar supports, there are other amenities which should make the Children's Hospital feel less like an institution. There will be a café just for families of pediatric patients serviced by Tim Hortons. There will also be a performance area where community groups such as the scouts can entertain hospitalized children.
The new Children's Hospital will still be a hospital with all that entails, but its many amenities should make the experience a bearable one for all families.