Tips When Caring For A Medically Complex Child In The Home
Caring for a medically complex child at home presents unique challenges that demand thoughtful preparation and specialized support. At Sentido Health, we recognize the importance of creating a safe and nurturing environment tailored to your child's needs. The term “medically complex” often refers to children who have multiple chronic health conditions that require extensive home care and rely heavily on medical equipment.
There are hundreds of medical complexities; below are some common conditions that fall into this category. No matter your child’s diagnosis, it's crucial to acquire the knowledge and tools to create a home where your child can thrive.
In this blog post, we explore ways to make everyday tasks more manageable and your home more accessible, empowering you to focus on what matters most—cherishing precious moments with your child.
Adapting Your Home To Medically Complex Needs
Bringing your medically complex child home from the hospital can evoke a wide range of emotions. You might feel overwhelmed by an abundance of information, or you may feel like you have little information to guide you. Either way, it’s important to understand your new daily routine to adapt your home to fit your child’s needs. This may include installing medical equipment and making accessibility modifications like ramps and grab bars.
When adapting your home for your medically complex child, consider asking yourself these top five questions:
Safety: What safety modifications are needed to prevent accidents and ensure well-being?
Accessibility: How can all areas of the home be made easily accessible?
Medical Needs: Where should medical supplies and equipment be stored, and do we need a reliable power source or backup generator?
Comfort: How can we create a comfortable and calming environment for my child?
Emergency Preparedness: Do we have an emergency plan that accounts for my child’s medical needs, and is it communicated clearly to everyone?
To help answer these questions, evaluate the specific requirements of your child’s condition and take inventory of your house and where your child spends the most time. Remember, every small change can significantly improve your child's quality of life and ease the daily caregiving routine.
Stay Organized
Staying organized is essential for managing the care of a medically complex child. Here are some methods to integrate into your life for keeping everything in order:
Create a Schedule: Find a calendar system that works best for you and stick with it. Whether digital or physical, choose one that suits your lifestyle and needs. A digital calendar can be shared with family members and your childcare team, allowing everyone to see how appointments and medications overlap with the family schedule. If you are a visual person, a physical calendar might be more practical. Writing down dates and times helps minimize forgetfulness and keeps you on track.
Follow a Routine: Establishing a daily routine can help keep you organized and provide structure for your child. Consistent routines for sleep, playtime, and meals offer comfort and ensure timely medication. While your life may be different now, maintaining aspects of your old routine, such as family dinners, game nights, or park visits, can bring a sense of regularity and comfort.
Keep a Care Journal: Designate a notebook, binder, or folder to store important information about your child, such as medication dosages, feeding times, and symptoms. Detailed notes help you remember questions for doctor’s appointments and track your child’s progress. Equally important is taking notes during appointments and hospital visits to ensure you don’t miss any crucial information.
Organize Medication and Supplies: Consider where you will be using medical equipment and supplies most frequently in your home. Keep daily-use items easily accessible, and store less frequently used items in a convenient place. Many Caregivers opt to keep their supplies in a single storage cabinet in a centralized place in their home such as their living room. Ensure you can monitor supply levels with your organizational system to avoid running out of essential items.
Prepare for Emergencies: Life can be unpredictable, so it's wise to prepare for emergencies and uncontrollable situations. Keep an emergency folder or binder in an easily accessible place with your child’s identification, a list of medications, and emergency instructions for equipment. Alongside the binder, store an emergency first aid kit with necessary supplies for your child, including a flashlight, batteries, extra supplies and equipment, water, and food.
By implementing these organizational strategies, you can create a more manageable and structured environment, making it easier to care for your child and reducing overall stress.
Set Realistic Expectations
When caring for a medically complex child, setting realistic expectations is crucial for both your well-being and that of your child. One of the main factors that causes anxiety and depression among caregivers is having unrealistic expectations of themselves. Understand that you can't control everything, especially as a caregiver of a medically complex child.
Instead, focus on what you can directly control, such as your attitude and how you approach each day. A positive attitude can go a long way, especially with kids. Celebrate small victories and milestones, no matter how minor they may seem.
Maintaining a balanced perspective and accepting that perfection is not the goal, will reduce stress and create a more positive and manageable caregiving experience.
Find A Support System
One of the first things you should do is find ways to access support. This is essential for your mental health and will help you manage stress, anxiety, and transition into your new normal. This support can come from friends, family, professionals, or online groups. Connecting with others who understand your situation can provide emotional support, practical advice, and a sense of community.
You are not the first person to go through this overwhelming experience, and you should take advantage of the knowledge these people can provide. If you do not know anyone directly in your life who can fill this role, there are many different support groups and resources where you can connect with other caregivers.
Start by reaching out to local support groups or online communities dedicated to parents of medically complex children. These groups offer a safe space to share experiences, ask questions, and gain insights from others facing similar challenges. Consider joining social media groups or forums where you can connect with other caregivers worldwide. Building a strong support network not only helps you cope but enhances the quality of care you can provide for your child
Don't hesitate to lean on family and friends. Ask for help with daily tasks and dedicate time with friends and family outside of your caretaking role. Professional support, such as counseling or therapy, can also be beneficial for managing stress and maintaining your mental health. Remember, seeking help is a sign of strength, not weakness, and you don't have to navigate this journey alone.
Managing Medical Companies and Providers
The care of a medically complex child often involves coordinating with various healthcare providers and companies. Below are some common types of medical companies and providers you might work with:
Hospitals and clinics
Primary Care Providers (PCP)
Specialists (Neurologists, cardiologists, pulmonologists, gastroenterologists, etc.)
Pharmacies
It’s important to know how to choose the best healthcare providers for you. This can be done through a referral given to you or by your own research.
For example, if you are currently looking for or unhappy with your current Durable Medical Equipment (DME) provider, consider reading our Choosing The Best DME Company article. Choosing a reliable DME company is critical. These companies supply essential medical equipment like ventilators, feeding pumps, wheelchairs, and more, which are needed for managing daily care routines at home. A good DME provider not only delivers quality equipment but also provides comprehensive support, including training caregivers on equipment use and maintenance. This support can significantly reduce the need for emergency hospital visits, promoting a safer and more comfortable environment for both the child and their family.
When it comes to Private Duty Nursing, understanding whether your child qualifies is typically guided by your medical provider, who will assess your child's conditions and recommend appropriate care options. This often involves discussions about the level of care needed and how it can be best provided in a home setting. Note: Insurance coverage is a significant factor here, influencing which providers are accessible to your family.
Once you are satisfied with all your medical providers and companies, ongoing contact is essential. Schedule frequent meetings with your child's PCP and maintain open lines of communication with all healthcare providers. Managing the care of a medically complex child involves centralizing all information. Therefore, keep detailed records of contact information, medications, treatments, and document any changes in your child's condition or responses to treatments.
Advocate For Your Child
Navigating the healthcare industry is often overwhelming and intimidating, however you want to make sure your child is receiving the care and resources they need. You’re the expert on your child—you know them best, so don’t let anyone dismiss your observations or concerns. It is essential to speak up if you have questions or worries about your child’s care. Healthcare professionals are there to help, and chances are they’ve heard similar concerns before.
Another way to promote advocacy is to involve your child in discussions about their health. Ask them how they feel and include them in decisions when it’s appropriate. This not only helps them understand their condition better but also builds a trusting relationship where they feel comfortable coming to you with any questions or concerns, they may have in the future. Giving your child choices and responsibilities whenever you can also help them feel empowered and capable of managing their health and well-being.
Find Time For Yourself
Finding time for yourself is crucial, even amidst the demands of caregiving. Taking breaks not only rejuvenates you but also ensures you can provide better care for your child. Here are some practical ways to prioritize self-care:
Self-Care Rituals: Dedicate time to activities that recharge you. Whether it’s taking a soothing bath, going for a walk, exercising, watching your favorite movie or TV show, reading a book, catching up with friends, or indulging in a hobby, these moments are essential for your well-being.
Establish Good Sleep Habits: Consistency is key. Try to go to bed at the same time each night to promote quality sleep. Sufficient rest is vital for both your physical and mental health, helping you tackle challenges with more energy and clarity.
Take Breaks, Big or Small: Give yourself periodic breaks, whether it’s a day off, a weekend getaway, or a simple staycation at home. If time away isn’t feasible, schedule a regular day each week to unwind with your child, focusing on enjoyable activities together.Even a few hours without appointments or responsibilities can provide much-needed relaxation and renewal.
Finding moments for yourself isn’t selfish—it’s essential for maintaining your own health and wellbeing. By prioritizing self-care, you’ll enhance your ability to care for your child with patience, energy, and positivity.
At Sentido Health, we have seen first-hand the struggles that parents of medically complex children face. We understand the emotional, physical, and logistical challenges that come with managing your child’s health needs. We hope that these tips and strategies serve as a valuable resource for your family.
Remember, you are not alone in this journey. There is a community of support, including healthcare professionals, other parents, and organizations, ready to assist you. Please do not hesitate to reach out to us for further assistance or guidance. Together, we can work towards ensuring the best possible outcomes for your child and your family.