Magazine article The Exceptional Parent

Laura's Care Book: A Survival Kit for Home Health Care

Magazine article The Exceptional Parent

Laura's Care Book: A Survival Kit for Home Health Care

Article excerpt

Two and a half years ago, my daughter, Laura, was born two months early. She suffered from respiratory distress syndrome at birth and spent a week on a respirator. A few days later, she developed hydrocephalus due to a grade IV brain bleed. In addition, she was diagnosed soon after birth as having a rare genetic disorder. Despite all of this, she came home and was quite healthy for about 18 months. At that time, the main concerns with Laura were her severe mental and physical developmental delays.

At the beginning of her third winter, Laura became very ill with pneumonia and was hospitalized. She barely survived. After three weeks, she came home on oxygen with a diagnosis of chronic lung disease. It soon became apparent that her care at home had become too much to handle alone, especially since a baby sister, Amy, had just arrived three months earlier.

Throughout the fall preceding Laura's pneumonia, Eileen Siminger and I were working together through the collaborative efforts of Parent to Parent of Vermont and the University of Vermont graduate program in Essential Early Education. Our relationship began as part of a practicum experience designed to introduce students to families who have children with special needs. The goal of this experience was to provide the family with needed assistance while giving the student an opportunity to work with a family without any professional roles attached.

The philosophy of this practicum experience can best be described as family-centered. Laura's Care Book was the project: a book describing how to care for Laura. We wrote this article because we wanted to share the idea of Laura's Care Book with other parents whose children have many caregivers in their daily lives.

Laura's daily care at this time consisted of tedious and time-consuming feedings by bottle and pureed foods (six hours/day), six inhalation treatments followed by postural drainage and chest percussion therapy (four hours/day), physical and occupational therapy (one hour/day), hearing aid and glasses time, plus normal infant needs: baths, stroller rides, cuddling, diaper changes, playtime, etc. In addition, there was baby Amy, needing and deserving a similar amount of time and attention each day.

We realized very quickly that we couldn't do it all. We needed help. Thanks to the efforts of our wonderful pediatrician, we were able to get the help that we needed in the form of nurses, respite care workers, and babysitters. However, with all these people came a new problem: How to provide Laura with consistent high quality care when she had so many different caregivers in her life?

In her first six weeks of home nursing, Laura had 15 different nurses. Nearly all of the orientation of the nurses fell on us, Laura's parents. Training them all was exhausting for us, and the nurses could not later remember all that we said. In addition, correcting them was awkward at times. We realized that a book on how to care for Laura would solve this problem. As a non-threatening instruction manual, it would be a reference tool and could orient someone in a pinch until a parent could do it orally

PROCESS

The process of putting the book together was a collaborative effort on the part of many of the people involved in Laura's care. The first step was to define all of the areas to be included. Eileen and I took a look at Laura's daily schedule and determined all of the information that a caregiver or nurse would need in order to meet Laura's daily needs. We came up with the following categories:

1. Important Information. This includes parents' work numbers, in addition to phone numbers of doctors and other service providers (such as occupational and physical therapists); also, the names and numbers of emergency contact people (who to call if the parents cannot be reached).

2. Emergency Procedure. This describes what to do in case of a medical emergency. …

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