When Your Child’s Birth Defects Turn You into a Home Healthcare Provider
There is the misconception that birth defects are somehow only something that might make a child stick out in a crowd, such as a shortened leg, a club foot, or a missing limb. In other cases the opinion might be that a birth defect is something that affects the inner organs of a child and upon surgery is not noticeable.
Even as these scenarios are true upon occasion, when your child’s birth defects turn you into a home healthcare provider, you will most certainly battle with feelings of guilt, inadequacy, fear, and a severe lack of sleep.
- You nursery will rival a hospital ward with its blinking machines, beeping gadgets, and monitors that alert you to your child’s heartbeat, breathing, and also nutrient intake. When at first confronted with durable medical equipment, many a parent is shocked and feels woefully inadequate. Fortunately, home healthcare agencies are at your beck and call and able to train you in the use of the machines until you feel comfortable with them. It is a wise idea to involve each and every family member in the training, including an outside caregiver such as a babysitter who has declared herself willing to be called upon to provide you with babysitting services for your child.
- Your best course of action involves the services of a devoted social worker who will be there to oversee the collaboration of different service agencies and who will gently but firmly help you to step into the position of your child’s home healthcare provider. Here are some things to remember as you are ready to embrace this development in your child’s health needs:
It may be necessary to change your child’s room to one that has more space for the medical equipment or more outlets. Most medical equipment will specify that an extension is not to be used, and thus you will need to have a direct plug to wall connection.
- Have a phone installed in your child’s room and keep emergency numbers and your physician phone numbers close by.
- Emergency medical procedures should be listed on placards which you laminate.
- Equipment troubleshooting steps need to be listed as well and taped onto the walls near the applicable medical equipment.
- Discuss earthquake, flood, or tornado preparedness with your physicians and get their suggestions of what to do in these emergency situations.
- If you live in areas affected by rolling blackouts, contact your power company to alert them to the fact that you have a family member living at home who is relying on medical equipment. This will get you off the main grid and most likely switched into the same grid as hospitals.
- Understand what interferes with your child’s health care equipment. For example, will your cell phone or laptop interfere with the heart monitor?
- A running washer or dryer, if too close to your baby’s crib, may interfere with the proper functioning of the child’s apnea monitor by providing false positive readings.
- Be mindful of these interferences and find ways to eliminate them.