We conclude our special needs family outings series with a discussion of what did not work so well for us when traveling. I’ve divided the post into two parts, the first being an assortment of issues/examples and the second will cover difficulties we had while flying and handling a medical emergency away from home.
We try mightily with careful planning and creative ‘rigging’ to minimize our risk, overcome obstacles to travelling and increase our mobility. We’ve been fortunate to enjoy several memorable trips in the last few years which were overall very successful. But they weren’t without bumps big and small along the way.
We tuck away duplicates of everything possible in case we ever forget something, but there are some essential items that have no such back-up. Most notably, the portable suction machine which we keep in a bag along with everything needed for an emergency. Having this “emergency bag” with June at all times is a matter of life or death. As such, I have forgotten to put it in the car about three times ever, and in each case I noticed its absence within 2 minutes and turned around to retrieve it without incident. Actually for the first two years of June’s life I *never* forgot it because we suctioned her at least once an hour. But as she grew, and especially after her LTR surgery last summer, June can clear mucus from her trach tube very effectively and does not need to be machine suctioned very often; sometimes only once in 24 hours. So the first time I forgot it, it was because I capitalized on the momentum of the particularly rambunctious kids who were already in the garage for an impromptu drive around the block. The break in routine, leaving from the garage rather than the house, contributed to forgetting to grab the bag. On the other two occasions, I had another person with me and we each assumed the other had grabbed the bag. Now we verbally confirm that assumption before leaving. In a less dramatic event, when June had first switched from total oral feeding to total tube feeding after her surgery last summer, we once forgot her feeding pump and prescription formula at home when we went on a day trip. I had the back-up g-tube extension, but we had no way to acquire the rare formula she needed. So we gave her water and Pedialyte manually that day and cut the trip short by just a little.
Lack of Handicap Access
We’ve struggled at times with lack of ramps or space for the stroller that carries June’s medical equipment. A local museum has a strict no-stroller policy at one of their wildlife exhibits, but we explained that (at the time, before June could walk, and I couldn’t carry both her, the suction bag and the emergency bag) the stroller is medically necessary to carry the heavy equipment in the same way that a wheelchair is necessary for some guests, and I asked if the exhibit is handicap accessible in that regard. That helped to clarify our need and we gained entry, but still while we toured the exhibit, other well-meaning staff approached us to explain that our stroller was contraband.
In another instance when we all went to support Greg at a mud/adventure race, we were assured access to handicap parking at the event itself, but the day of, due to muddy conditions, all vehicles were required to park in a field 18 MILES AWAY and return via shuttle busses. So, we parked in the field, loaded the emergency bag AND oxygen tank into the double stroller since we would not have access to our car, pushed the stroller across uneven rocky ground and loaded it into the back of a yellow school bus that served as a shuttle. Then at the event they weren’t kidding about the mud. The heavy laden, low-riding (non-jogging) double stroller sunk into the stuff. At times, my feet had no traction to even attempt to push it, and when I did push, the front end was just accumulating a wall of mud in front of it as it burrowed further into its own little mud quarry. Several times, friendly race finishers, caked with mud and full of endorphines and adrenaline, happily picked up the entire stroller as I traversed the roughest patches of the spectator areas. To top it off, Greg had no cell phone on the muddy, wet race course and couldn’t communicate to me that his team was taking four hours longer than expected to finish. By the end of it, we were all thoroughly baked in the sun, I had wearily checked with all the medical tents and authorities for news of Greg’s whereabouts, and it was only by a small miracle that we eventually did spot each other in the sea of 10,000 muddy people.
Environmental Hazards: Smoke, Heat and Weather
The most common environmental hazards we deal with are proximity to smoke and lack of air conditioning. Usually we can counter these by leaving the smoky area or hopping into the car for some AC, but that’s not always possible (such as when your car is parked 18 miles away. Ahem.). When visiting relatives once, we made plans to stay at a home that I had completely forgotten was infused with 50 years of cigarette smoke AND had no air conditioning. We had to change accommodation as tactfully as possible. In another instance, Greg and I used the Hotwire website to secure discounted lodging only to find that the hotel it booked for us only had smoking rooms available (even given the medical basis for our need). They explained that they could not offer a refund since we dealt with Hotwire, and likewise, Hotwire has a rather iron-clad no-refund policy with ample warning-jargon in the usage agreement that room preferences and amenities may not be available. (This warning never bothered me because we aren’t picky about amenities, but the possibility of being left with only smoking rooms never occurred to me.) We accepted the fact that we’d probably would not get a refund, and looked around for other lodging that night anyway, without success. Ultimately we returned to the Hotwire find and reluctantly settled into the smoky room for a few hours of sleep.
In terms of weather, we always have to be mindful of potential power outages that would limit our use of June’s medical equipment as well as any conditions (road closures, disasters) that would affect our access to medical care if needed. Thankfully we haven’t had any problems, but we have altered our course when bad weather arose- including a few minutes after we took this photo while stretching our legs at a park on the Mississippi River. A severe storm was blowing in quickly from just across the river, and a minute after we snapped that photo, everyone in the area was scattering, running for cars and shelter as the surprising 60 mph winds arrived just ahead of the rain. Somewhere at that park is a favorite sparkly shoe of June’s that we lost when we picked her up to run to the car. (Thankfully, our fashionista has plenty more.)
Check back later this week for part two!