Getting outside with medically complex kids comes with the normal challenges of taking kids outside, but also comes with a completely unique set of obstacles to overcome and logistics to coordinate. More and more research is coming out showing evidence of improved physical, emotional, and mental health in children that spend regular time outside. This applies to all children, including those with medical conditions requiring ongoing care or equipment.
Our family loves being outside but we have spent hundreds of hours inside the walls of hospitals and clinic rooms. In late 2018, our then 1-year old was diagnosed with a rare and aggressive leukemia that required a bone marrow transplant. He spent months in the hospital and several years being immune-compromised after. At nearly the same time, our then 3-year old was diagnosed with a benign brain tumor that required a year of chemotherapy.
Navigating the outdoors with medically complex kids brought its own new set of challenges and it seemed like there was limited information about how to do it! We have learned a lot along the way.
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Taking a medically complex child outside may seem overwhelming when medically complex care can be overwhelming by itself to begin with! Thankfully we don’t have to go further than our own deck or backyard to access the outdoors!
We spent several months in the hospital with our son and several more months living at a Ronald McDonald house next to the hospital. When we came home we spent hours in our back yard sitting in the hammock and reading books. It took quite a while before we were comfortable and our son was healthy enough to be able to adventure beyond our house.
Thankfully there are nearly endless ideas of things to do in a backyard. Team member Mary wrote an entire post about backyard adventures.
Talk to Your Doctor
We were given strict instructions from our transplant team that our son was not able to touch dirt with his bare hands/feet for a year after transplant. We were also told he couldn’t be in direct sun since it could cause intense rashes.
We were open and honest with our doctors about what kinds of outdoor activities we liked to do and they were able to give us guidelines about what was safe and not safe. The doctors were able to keep a close eye on our son’s lab results to let us know when it was safe to let him touch dirt again and be bare feet outside again, and when he could play in unfiltered water.
Because we were able to communicate closely with our care team, there were some outdoor activities we were able to do sooner than a year – but we would have never known if we hadn’t specifically asked!
Paved Trails and Local Parks
Once you feel comfortable with backyard adventures, the next adventure can be paved trails and local parks. Early on after transplant, we mostly did stroller walks on the local paved trails near the Ronald McDonald house where we stayed. We bought a rain cover for our stroller to protect against both rain, dust, and to keep dogs and other people outside of the stroller bubble.
Visit During Non-Peak Times
During the severely immune-compromised time, the doctors recommended that we not use public playground equipment unless we disinfected it and there was no one else there. On Google Maps you can look at various parks and see the times they are usually busiest – going earlier in the day or in the middle of the week often are better times to go for immune-compromised kids. Bringing a pack of disinfecting wipes allows you to take advantage of the swings or small playground features.
Expand Your Adventures
The more you do backyard and neighborhood adventures, the more prepared and confident you will become! Celebrate small wins of getting outside and tackle further and longer adventures – I promise the more you go, the easier and more natural it will become finding places that will work for your family!
Equipment for Taking Medically Complex Kids Outside
Packing a “go-bag” with extra medical and emergency supplies is very important. If you are a parent of a medically-complex child, you probably already have some sort of system for all of the medical equipment.
We always carried a bag with extra feeding tube supplies, an extra dose of the next medication, a thermometer, disinfecting wipes, and emergency contact information written on a card. Having this packed and ready to go made leaving the house less overwhelming.
Some of the medications we used need to be refrigerated so we pre-dosed them in syringes before we would leave the house. The pharmacy gave us little caps for the syringes so they wouldn’t leak. Many pharmacies give you these for free (especially at a Children’s hospital) if you request them!
We packed medications in a soft-sided lunch pack with ice packs to ensure they stayed cold until it was time to give them. Specific insulated medication pouches are another great option for going out and about with medications.
I also set alarms on my phone for medication times so I wouldn’t forget when we were out on adventures.
Getting Around Outside
The BOB stroller is still one of our most-used pieces of outdoor equipment. We actually still take this inside the hospital for our 5 and 7 year olds for after anesthesia since it is so much easier to navigate than a wheelchair for small kids and we can use the under-basket for extra equipment.
These can be pretty spendy but they hold up really well over time and you can often get really nice used ones. We bought a universal rain cover for the stroller and used this both indoors for appointments and outdoors to protect against the elements.
The BOB hold kids all the way up to 75 pounds! (Our family has definitely exceeded the weight limit by having one child sit in the seating area and one kid sitting in the foot area and it still supports them really well!)
There are many other options for jogging strollers at different price points, this article lists several other options with price comparisons as well! Keep in mind that jogging strollers are extremely versatile for use both inside and outside for medically-complex kids!
A child carrier is also an amazing tool for getting outside with medically-complex kids. We love our Ergobaby 360, which holds kids up to 45 pounds. We have routinely used the Ergobaby for both medical appointments and getting outside!
The flexibility and ease of packing down the Ergobaby carrier has worked the best for our family, but there are many different options for choosing a hiking carrier. Hiking carriers are not only limited to just hiking – they are wonderful for safely taking medically-complex children to zoos, parks, nature-walks, and even for neighborhood walks.
If you have more equipment to carry than comfortably fits in a stroller or child carrier, an off-road wagon is also a good option for getting outside. We used a collapsable wagon for paved and gravel trails when we were towing two kids and feeding tube supplies.
We were gifted a wagon similar to this one from another family at the Ronald McDonald house after they were done using it. It holds up to 150 pounds and folds down. The Wonderfold Wagon X2 is a more heavy-duty version that also holds up to 150 pounds and includes a removable shade cover.
Check out some of our team’s favorite hiking strollers and wagons!
Our bike trailer was our next most-used piece of outdoor equipment after our BOB stroller! It allowed us to go longer distances while still bringing along medical equipment in the back compartment. There are a variety of styles and sizes of bike trailers. Kids Ride Bikes has multiple reviews of different brands. We chose one with plenty of space for two kids and a lot of space in the trunk. Our specific brand isn’t made anymore, but this one is similar.
A play fence is better suited for younger kids, but we used this play fence inside our son’s hospital room to create a safe enclosed play area where he wouldn’t be able to go further than the length of his IV lines. Once we were home, we used the same gate to create a safe outdoor play space by putting blankets down on the grass and enclosing it with the play fence.
We even took the play fence car camping to create a safe space for the toddlers while we set up camp!
Skin protection is extremely important for medically-complex kids since the skin is a barrier against bacteria and even small cuts or bites can have bigger consequences. Long pants, socks, and closed-toed shoes are highly recommended.
There have been many wonderful articles written on this blog about choosing clothing for hiking, including this one about best hiking shoes for kids, this one about hiking clothes for kids, and this one about hiking pants for kids.
Some companies like Target have started to make adaptive clothing including things like kangaroo-access abdominal pockets, but unfortunately adaptive outdoor clothing still has a lot of room for growth.
Occupational and physical therapists often have wonderful out-of-the-box ideas for helping adapt equipment for kids to enable them to get outside and enjoy nature with their peers.
Speak to your doctor/therapist for your own specific situation, but our occupational and physical therapists often encouraged us to take our kids outside to natural areas to work on their balance, coordination, gross motor strength, etc. vs adding more indoor exercises to work on.
Our feeding therapist gave us a special backpack that our son could wear to hold his food and food pump while his NG feeds were running so he could be active even when his pump was running. For a while he had to have his feeds running for hours at a time so it freed him up to be much more active!
Water Play for Medically Complex Kids
Clean Water Play
Water play can be a tricky one, especially if your medically-complex child needs to stay away from germs or needs to keep a central line dry. The first summer after my son’s transplant, we had strict instructions to keep him away from lakes, streams, hose water, public pools, or any other body of water that could contain germs.
It was a hot summer and he was wanted to play outside in the water with his sister. To make it accessible for him, we took clean water from inside the house and filled up a water table and a little kiddie pool with clean water for him to splash in.
Water tables allow for a lot of fun outdoor water play! Make sure you drain and dry them after use so they do not start growing bacteria or mold! We used Clorox wipes to wipe it down before using it again.
Protecting Central Lines and Ports
Again, make sure you talk to your doctor or care team to discuss when it is safe for your child to be around water. There are certain times when kids absolutely can’t get areas wet, like incisions after surgery. Our son had a central (Hickman) line for about 9 months which couldn’t get wet.
He could never have his chest fully submerged in water during that time, but he was still able to take baths in shallow water and participate in activities like the water table. Glad Press-n-Seal works great on top of a central line to keep it dry. We would typically tape the edges of the Press-n-Seal with foam tape to seal it.
A relative of ours sewed central line covers similar to these ones that additionally kept the central line dry and protected.
It is better to be safe in these situations, and only do what your doctor recommends and what you are comfortable with. Just keep in mind that there are options for protecting central lines so that kids don’t have to completely miss out on water fun!
Sun protection is important for all people, but especially medically complex kids. After our son’s transplant they told us that too much sun exposure or a sunburn could trigger dangerous Graft vs Host disease in our son so we needed to be extra cautious with sun protection.
We purchased a long-sleeve/long pants swimsuit from SwimZip that worked great for full sun protection. SwimZip makes these types of swimsuits up to size 5/6 for kids! They are UPF 50 and are easy to get on and off because of the zipper.
As kids get older, a long-sleeve UPF rash guard is a great choice for sun protection. This article has great options for choosing UPF (Ultraviolet Protection Factor) clothing for kids. Remember that rash-guards/swim shirts shouldn’t be used for active play other than water since they can cause overheating!
Don’t forget a good sun hat when choosing your water-play clothing! Our favorite sun hat is the Sunday Afternoon Kids Hat. This article has excellent recommendations for other options of sun hats for kids at different price points.
Any area of skin that is not covered by a hat, shoes, or UPF clothing should have sunscreen applied 20 minutes before heading outside. Make sure to read the directions to determine how often the sunscreen you have should be re-applied since it can vary from brand to brand. This article gives a good comparison between various natural sunscreens!
Other Sun Protection Tools
Sunglasses can be worn even by babies and toddlers! This article compares sunglasses options for babies through teenagers.
This sun blanket is UPF 50+ and a great option for babies who are too young for sunscreen.
If your child has a hard time with sun protection methods like wearing a hat or sunglasses, a sun shade shelter provides a safe place to play away from the UV rays.
Monitoring Air Quality
Unfortunately, summertime now sometimes means needing to monitor air quality from wildfire smoke. Medically complex kids are at a higher risk from poor air quality than the general population.
Airnow.gov lets you enter in your ZIP code and see the current Air Quality Index. It also provides a 3-day forecast for air quality which allows for some planning ahead for outdoor activities.
America the Beautiful Access Pass
If you or your child has a permanent disability, you are able to receive a free lifetime National Parks Pass. This pass is available to US citizens or permanent residents with a documented permanent disability. These can be ordered online here (although there is a $10 processing fee if ordered online) or the passes can be purchased in person.
Finding other parents with kids in similar situations can be enormously helpful. When our family was staying at the Ronald McDonald House in Seattle, another mom of a child undergoing chemotherapy put together a list of outdoor spaces in Seattle without crowds. This list got passed around from family to family and helped families safely go outside.
Your doctor or social worker may have resources for parent groups. Social media can also be a great resource for finding other outdoor families in similar situations. If you can’t find the group that you need, consider starting an online group because there is a good chance there are others looking for similar community.
Child-life specialists are employed by hospitals to help children and their families manage anxiety and stress related to hospitalization and ongoing medical procedures. These specialists are trained in child development and are exceptional at play-based education and stress management for kids.
These specialists frequently visited during our inpatient hospital stays to help make the hospital stay less traumatic. If you are spending ongoing time in hospitals or clinics, ask the child life specialist if there are ways you can safely bring nature inside – whether through indoor water play, loose parts (such as rocks, sticks, leaves, etc), or even keeping a nature journal through observations through a window.
Outdoor Summer Camps for Medically Complex Children
There are various organizations that host summer camps for medically-complex children, children with disabilities, and children with rare diseases. Often these organizations offer free or reduced-fee fees for attending. Some allow the entire family to stay. Here is a list of over 50 different camps in the Pacific Northwest for kids with various medical or intellectual challenges. Kids of Courage offers adaptive summer adventure camps and winter ski opportunities. The Paul Newman Serious Fun Camps offer many summer camps for medically-complex kids free of charge.
This is not an exhaustive list, but talk to your hospital’s social worker or child life specialist to see if they can connect you with resources in your area. These camps are specialized in caring for medically-complex kids and can give you and your child more confidence in getting outside!
Keep Moving Forward!
Today our son has mostly recovered from his cancer and bone marrow transplant and is a thriving 6-year old! His 7-year old sister completed her year of chemotherapy for her tumor behind her eye and only requires yearly follow-ups now.
We are able to get outside a lot more than we used to when we were in the thick of all the medical appointments – but we are so glad we still took the time and effort to get outside even when the kids were very sick. It helped us maintain our mental health, helped improve our whole family’s physical stamina, and we have those positive memories to look back on along with the hard hospital memories.
Raising a medically-complex child can feel isolating and exhausting but I want to encourage you to take the time to spend time reconnecting with nature, in whatever form works best for you. You are doing the hardest and best work – keep going mama!
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Getting Outside With Medically Complex Kids
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