Traveling with a medically-complex family member requires an abundance of logical planning. There is a lot of equipment and supplies that must accompany them. You cannot simply jump in the car and go…. You must think ahead about medications and stockpiling any additional supplies you may need for extended travel. You must consider the accessibility of your end-destination and the level of emergency response you can expect if something goes wrong. You must bring every piece of medical equipment and all the supplies you might need. Don’t forget emergency supplies and also back-up supplies for those emergency supplies. You must always be prepared!
Travel with a medically-complex child is absolutely do-able, and it is 100% worth it! But, it requires that extra preparation!
Because Malachi uses a ventilator, both for nighttime/sleeping and respiratory emergencies and pain crises, our travel set-up very closely resembles the mini ICU/acute-care environment we have at home. There are two ventilators, each carrying a value of many, many thousands of dollars; both big and small tanks of oxygen, as well as a large machine that sucks in air from the surrounding environment to convert to oxygen for sustained use; a humidifier for night use; two machines designed to help clear the airway of mucus-induced blockages; two heart-rate/oxygen monitors; a large, double stroller that can carry both Malachi and his equipment when we are out-and-about; a small wheelchair and an adaptive bathroom/shower chair; a high-powered blender and all of the ingredients for his very specialized diet; in addition to all of our daily and weekly supply needs, back-up supplies, and emergency supplies. And none of that includes the typical duffel bags of clothing, bathroom supplies/toiletries, etc., that each of us need to travel on our own.
When we first began traveling with Malachi, our goal was to venture out once per quarter to spend a long weekend in a fun location. The plan was to stay in a local hotel, which we did exactly three times.
It didn’t take long to realize just what a gigantic pain in the ass it was to stay at a hotel when your family situation necessitates traveling with a significant amount of medical equipment. Simply getting into a hotel room and setting everything up required multiple trips to and from the vehicle and a major exertion of physical effort. We were completely exhausted by the time we had everything unpacked and set-up as needed. It was irritating AF. And, we had the whole situation in reverse to look forward to a mere two or three days later.
When travel that is intended for enjoyment starts to feel like more of a hassle, it is time to reassess what you are doing. While the trips were nice enough and we always ended up having a good time, Jason and I quickly began to dread the actual travel experience.
We came to acknowledge that hotels simply do not work well for our family.
We wanted to continue traveling, but we realized that we would need to find a better way.
We needed to find a way that worked for us.
So, we quit hotels.
Our solution was to down-size our family to a single vehicle. We were both, by that point, working full-time from home with no plans to return to an office after the pandemic. Since neither of us were commuting, we no longer needed two cars. So, we traded Jason’s Toyota Tacoma in for a gently-used Winnebago camper RV.
A year later, we upgraded that Winnebago for a camping trailer and traded in my Toyota Rav4 for a new Chevy Suburban with towing capabilities.
We are now an RV-ing family, and it works sooo much better for us!
The RV has opened up so many doors! It grants us the freedom and space to travel with all of the medical equipment we need to bring. And, as an added benefit, we get to spend time on the road, outside and at campgrounds. It is the best possible travel situation for our family.