With more people vaccinated and CDC restrictions loosening, travel and entertainment are on the list for many families with medically-complex children. Even if you don’t plan on taking a long-distance trip this summer, you can still spend time outdoors and enjoy more normalcy since the pandemic started.
When you’re the parent of a medically complex child, getting out of the house can feel stressful. But with some planning and creativity, there are ways for your family to do fun things together, whether it’s taking a nature walk, visiting the aquarium, or going on a camping trip.
Below are ten of the best tips recommended by our pediatric private duty nurses when you’re planning to leave your home with a medically complex child.
1. Start with a Master List
If you’re keeping track in your head, you’re more likely to forget something. To ensure you bring along everything you need, make a master list. You only need to do this once, though we do recommend keeping the list on your computer or phone so that you can make updates as needed.
On your list should be all the things you need to bring for a successful trip out. Laminate the list so you can cross things off with a dry erase marker or keep it on your phone and check things off as you go. Your private duty RN or LPN can help you create the list and verify you’re not missing anything.
2. Be Prepared with a Go Bag
A go bag is a pre-packed bag with all of your child’s primary and emergency supplies if you need to leave quickly. Having this on hand allows you to take up your friend’s offer on going to the zoo or attend a last-minute picnic with your neighbors. Your pediatric home health nurse can help you ensure that your bag is prepared for your outing, take inventory when you return, and restock if necessary.
3. Categorize Your Medical Supplies
Having a list of the equipment you need is helpful, but you also need to make sure all your supplies are packed safely and efficiently. To do this, create an organizational system that you can follow.
For example, you can keep everything you need for g-tube feeding in one bag and everything you need for the trach in another bag. It also helps to keep things categorized at home so that you can grab what you need when you leave. Large pencil cases or waterproof packing cubes work great for this purpose.
4. Use Backup Equipment for Travel
Often, insurers will allow you to have a backup device if your child is reliant on it. For example, if your child needs to be on a ventilator all day, your insurance company will likely give you a backup. Many families choose to keep this equipment ready to go for travel. This makes it easy to pack and go when it’s time to leave.
5. Request Portable Equipment When Possible
Most medical devices have a portable version, but this doesn’t mean you will automatically get them. If a portable version is available, you can reach out to your insurance company or the medical equipment provider to see if these are an option.
Things like feeding pumps or cough assist devices can be large and bulky, but smaller, more travel-friendly options are available. Continuum Pediatric Nursing can point you in the direction of where to get this equipment.
6. Account for Batteries and Electric
Most medical devices require some type of power, either from a battery or an electrical outlet. Make sure you plan for this by packing extra batteries, power cables, and chargers. If you use devices that run on specialized batteries, see if you can get an additional backup battery for emergencies. Home health suppliers will often provide a backup battery for security.
7. Choose How You’ll Carry Everything
Now that you have a system for what you’ll pack and bring along, you need to know how you’re going to carry everything. This is especially important for longer trips. If your child has a wheelchair or medical stroller, you may be able to hold everything in it. Talk to your nurse or case manager about a good carrying case for things like ventilators and feeding tubes.
One product our families love is the carabiner clip. Carabiner clips allow you to attach bags, backpacks, and other essentials to your wheelchair or stroller. If your child isn’t in a wheelchair, consider bringing a wagon or small luggage cart to hold their supplies within reach.
8. Be Prepared for Emergencies
As you know, things can happen at any time. So it’s best to pack extra. Even if your child doesn’t dirty all of their diapers or use extra clothes, you can return them to your medical supply piles at home. Also, be prepared for potential emergencies that may come up.
9. Bring Along Contact Information
Bring along the contact information of your child’s doctors and pediatric home health agency. This way, you can reach them if something comes up. We also recommend having a piece of paper that describes your child’s medical condition and their medications. This information is vital if there’s an accident or emergency.
If you’re traveling out of state, research doctors and hospitals in the area where you’ll be staying. If something happens, you’ll want to know where to take your child and what providers are covered under your insurance. Keep in mind that Medicaid does not follow you from state to state, and you may need to go to the Emergency Room in case of a medical emergency.
10. Don’t Give Up – Practice Makes Perfect!
Traveling with a medically complex child can be challenging, but it gets easier over time. Start by doing small things like visiting a neighbor, taking a walk, or going to the park. This way, you’re still close to home and can better anticipate the types of issues that could arise.
Also, remember that you’re not alone. Enlist help from your spouse, older siblings, a grandparent, etc., who can assist with checking off the list, testing batteries, or replenishing supplies.
Pediatric Home Health: Improving Quality of Life for All Children
Continuum Pediatric Nursing has been working with medically complex children and their families for over 25 years. We provide pediatric home care, respite care, intermittent skilled nursing, school-based nursing, and more, depending on your region. Contact our staff today to learn how we can support your child’s wellbeing and ensure an improved quality of life for the whole family, contact our team today.