This summer our family took a road trip. I never thought this would be possible for us, and it took a lot of preparation and work, but we did it!
My husband and I have two children; our son is six and our daughter is three. Our son has a rare gene mutation that has caused intractable epilepsy, movement disorders, low muscle tone, developmental delay, the need for a feeding tube, and the constant use of a ventilator with a trach. We knew when we began planning our adventure that it we would have to take many precautions to ensure his safety. Our daughter is an insane toddler, and that comes with its own challenges! We also recruited my seventeen-year-old brother to help us, as the nurses that we often have in our home were not able to give up two weeks of their lives for us.
We learned a lot on our trip, lots of things that will help us with future planning. But, we also took the time to learn a lot before we left. In my experience, other parents are often the best resources for unique circumstances like ours. I sat down with a few of my good friends who I knew had recently travelled with their children who are medically complex. They shared tips like:
- Pack in a way you don’t have to unload everything every single night
- Use totes for organizing medical supplies
- Label things
- Pack supplies by body system (respiratory in one place, GI and feeding supplies in another) besides rescue medications which should all be together
All of these things were incredibly helpful in preparing for our trip. And being prepared is being safe!
Here is what we learned on our adventure.
We took the time to sort out which items we could purchase or pick up as we travelled (diapers for our daughter, wipes, Q-tips for trach and GJ-tube cares, dish soap) and things we couldn’t buy just anywhere (diapers for our son, oxygen, sterile water, ventilator circuit parts, trachs). Because there were five of us traveling in one van, space was very limited. We do have a large E-150 Ford van with a lift and a little more space than a minivan or SUV, but still nothing excessive. We packed more of the things we could not replace. We made a special tote that included an entire ventilator circuit set-up if our main or back-up pieces broke or failed. It was clearly labeled and unloaded at every hotel.
We also figured out how much power our van would provide as we were traveling since we would be spending about forty hours driving over two weeks. Our son’s ventilator has an internal battery and an external battery; we have a primary vent and a back-up vent. We also use a pulse oximeter, a feeding pump, and two suction machines (stationary and travel). We purchased car cigarette lighter to outlet converters for the van and learned the only machine we couldn’t power while driving was the heater that provides humidity for the ventilator. This led to reaching out to our respiratory therapist to learn how to mimic this machine, since it just used too much wattage.
We also made some changes to our emergency bag (or e-bag or go-bag) that goes everywhere with us because of Jacob’s trach. We converted it from a large tote bag to two smaller backpacks; one carrying the suction machine and all trach and feeding supplies; the other carrying typical diaper bag stuff, necessities for big kid brief changes, any medications needed for the outing, and emergency medications. We knew there would always be three adults along, so two backpacks was a perfect hands-free solution.
Have a System
We loaded rescue medications and needed equipment in last, just before we climbed in ourselves. We needed to know where those things ended up, but my daughter’s pajamas from last night? Who cares! Have a strategy, even if the only time you need it is for the most important things. Your suitcase of clothes doesn’t need to be organized, but emergency trach change supplies better be!
When traveling with a trach and the equipment that comes along with it, cleanliness is also important. When it came to loading and unloading, we took apart Jacob’s stationary ventilator set up as little as possible; leaving most things connected and little room for germs to get in. We carried a roll of unscented smaller trash bags with us and would put the tubing and everything attached to humidity in the bag and tie it off, then discard it when we set up at a new location. It wasn’t perfect, but this system protected it the best we could without using new equipment every time. Another thing we did for cleanliness and sterilization for some of the equipment was set up bins: one for dirty syringes, one for Control III to sterilize breathing equipment, and one for clean syringes with individual bags for sterile supplies. We dumped and remixed Control III at each hotel and usually all syringes were clean when we packed. Those bins could be stacked together, saving room.
There were times we made stops and didn’t need to unload the entire van like we did at hotels. We tried our best to keep the things we would need for each outing relatively close in reach. Of course, there were still times we had half the contents of the van sprawled out in a parking lot looking for that one doll my daughter just needed right now. Or it was emptied out to make room to change diaper explosions, which never happen at convenient times.
Emergency Planning (It Can Happen Anywhere!)
I already mentioned the changes we made to our emergency bag to make being prepared on-the-go easy and convenient, but we had to rethink this for while we were driving or in a hotel lobby. Jumping outside the comfort (and REALLY established emergency preparedness) of home is hard. And for complex families, this is one of the reasons why. We had a lot of new experiences on our trip, and we knew we would. Overcoming that fear was one of the biggest hurdles.
On the back of the driver’s seat of our van we hung an over-the-door organizer and put things like deep suction catheters, saline bullets, and charging cords in it. When we got in or out, we also added our emergency trach bag to it so we had it all in one place. This did come in very handy at one point. Jacob had a plug in his trach—no matter how you try to mimic humidity, he just wasn’t used to the drier air. His oxygen saturations dropped to the low 50s and I safely pulled over on the turnpike. One issue with our very full van was that I was not able to climb back and help my husband. As I was pulling over, he was utilizing our set up and began suctioning, but the plug didn’t move. I reminded him to turn on the oxygen and handed him the red trach bag and he quickly changed his trach. We were able to greatly improve Jake’s oxygen saturations fast because we were ready for anything.
A similar situation happened in a hotel lobby with a seizure. We were able to quickly transfer Jake to a couch and administer seizure rescue meds because we had prepared and knew exactly where the needed medication was.
Just Do It!
My advice to go along with these words…is to go. Get out. Go do something. Don’t be afraid to leave the comforts of home. Just plan ahead. Note hospital locations on your route. We spent months planning and still had to improvise at some points, but that could happen right at home anyway. Emergencies WILL happen, especially with our amazing children and their medical complexity. If we are prepared, we can handle them anywhere.