The crisis of Becca's birth and medical complexity began in 1989 and her lengthy NICU stay would put us on the road to learning to Parenting Special Needs and the road to navigate the very new and challenging world of medical needs and school.
An improper unplanned discharge set up the first time I would have to face advocating to change the system. My sister who was in medical administration made a phone call to the state talking about the lack of discharge planning for Becca after six months in the NICU. Twelve days of no sleep, no help and no lifeline, I was taking care of a child who still belonged in the Intensive Care unit alone and wthout any tools.
Heading in one day to visit Becca I was met with the social worker at bedside. The hospital's quality control and administrative leads wanted to have a meeting where we talked about what happened and this Mom was scared. Santa meeting Becca at bedside was the calming force before heading into the boardroom to tell the story of my twelve days home with Becca and answer the boards questions.
That meeting would not only change everything for Becca but would get Becca's primary nurse hired as the first NICU full time discharge planner. The hospital would continue to set up and coordinate the home care that our new primary doctor had been trying to set up from home and that took Becca back to the hospital.
The hospital arranged to put together a Care Conference with all the people involved in Becca's care.
The Doctors, the Case workers from the county and the hospital (Waiver services were put into place), her Primary care physician, the Birth to Three services workers, the School District, the Nursing agency, the County Health Nurse and our Pastor from our church. Thirty-four people to get Becca home and surround her with the care she and our family needed to be safely out of the hospital. Planning for palliative care long before it was ever dreamed of being a concept. We talked about what to do if she needed to go back to the hospital or heaven forbid she would die at home. A topic no parent would ever want to face. How to avoid a length Child Protective Service investigation that would endanger my other children from not only losing loosing their sister, but their family while they awaited the results of the autopsy that would clear us of any wrong doing. They had seen stories of other children being removed from the home after the death of a critically ill sibling. I learned that the CPS system is there to protect kids but sometimes it just doesn't get things right. Children who die at home it is always someones fault. We had to make plans for just that circumstance, because they thought the professionals had little hope of survival. But on the flip side they worked on goals for her development, goals to continue to music therapy that I had started at bedside within 24 hours of being in the NICU.
Becca was fortunate to be born shortly after Katie Beckett opened the doors to getting our kids out of the hospital and home. A waiver of funding based on Becca's income only brought Becca home and the supports she needed to be there. Becca was blessed to qualify one of Minnesota's 200 waivers for children and adults who needed to be at home at Intensive care level needing hours of RN level nursing and that was provided by the pediatric nursing agency Caregivers Network. They coordinated the care at the hospital and even had the main nurses train while she was still in the Pediatric Intensive Care unit. Care coordination at its best.
IFSP my first experience a school acronym and my first meeting within the educational system. I was invited to be a team member to help creating an Individualized Family Support Plan for Becca's education at 6 months of age. Becca once home would start having the physical therapists, teacher from the school both coming to our home. School at home with a tiny baby. She was in her own environment and the nurses and I and her siblings all included in helping Becca learn and shine.
Becca was blessed with a Medical HOME already back in 1990 after advocacy that not only gave Becca her freedom to be home, but the tools she and our family needed to SHINE.
Thank you Children's Hospital of St. Paul for the gift of thinking out of the box and creating a Medical Home for Becca and being apart of her care for the first 7 years of her life. Thank you to all the systems that came together to make that happen.
Anny
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