![]() This also worsened the problem of not being picked up - when the staff did have time to pick up one of the babies, they tended to avoid the one who was constantly vomiting and leaking stomach acid. This eventually spiraled into total oral aversion - he vomited so much and so often that he rejected oral feeding and a pacifier, anything that touched his mouth or lips would trigger a gag reflex. He would cry until he spit up whatever formula was in his stomach, then stomach acid, then intestinal bile. In the facility, if I wasn’t there, he would cry alone in his crib. Picking up a crying infant is a basic human instinct because being held is a basic human need. If he had been at home, I could have picked him up when he cried. When I couldn’t be at the facility, my son spent most of the day alone in his crib. As a toddler, she quickly learned that she was allowed to mute her brother’s pulse oximeter but not any of the other children’s machines. ![]() Friday through Sunday we would bring our daughter to the facility. I would drive up and stay in the Bay Area Tuesday through Thursday in order to be at the facility with my son, and my husband would take our daughter to daycare. Our family eventually settled into a routine. During this time, as a mother, my heart was broken no matter where I was, because whether I was at home or at the hospital, something was always missing. California only has 10 pediatric subacute facilities, two in the Bay Area and eight in Southern California. The closest facility that met my son’s medical needs was 170 miles away in the Bay Area. When my son was born, we lived in a small rural town in Fresno County. It also disrupts the lives of parents and siblings. Institutionalization is orders of magnitude more expensive than home care and developmentally harmful for children. In some situations, children with medically complex disabilities spend months in the Intensive Care Unit, the most expensive and least developmentally appropriate place for kids. The location can be the rehabilitation wing of an acute care hospital, a pediatric subacute facility, like where my son lived, or a specialized home for children with developmental disabilities or medical needs. Institutionalization refers to care that is provided in a location other than home. On the other hand, it didn’t feel like home either - it felt like a clean and well-run orphanage. On the one hand, the facility felt less alien than the NICU. ![]() ![]() I was just a mom, convincing myself that I had made the right choice of how to take care of my son in a situation where I didn’t actually have any good options. I didn’t know the history of disability rights and the fight for disabled people to receive care in their own homes, not nursing homes. My husband and I were making decisions based on the information that was presented to us. It was presented as a place where both his medical needs and his developmental needs would be met, because it was supposed to be more homelike than the hospital.Īt the time this was happening, I didn’t know what care at home could look like for a child with complex medical care needs. ![]() I remember being told that the mortality rate for children with tracheostomy tubes in the first year of life was so high that the hospital had to send them to a facility for transitional care. Care of a child with a tracheostomy, especially a tiny infant, requires constant supervision and intervention to keep the breathing tube open and in place. When he was only a few weeks old, he had surgery to place a tracheostomy tube for breathing and a gastrostomy tube for feeding due to a complex craniofacial syndrome. I know, because my son was institutionalized in a pediatric subacute facility for most of the first year of his life. For children with complex medical needs, this is still true. Children belong at home with their families. ![]()
0 Comments
Leave a Reply. |
AuthorWrite something about yourself. No need to be fancy, just an overview. ArchivesCategories |