Today we conclude the special needs family outings series with the second part of the discussion on what did not work so well for us (see part 1 here). Here we’ll share difficulties we encountered during two of the most challenging travel situations we have faced: flying and handling a medical emergency away from home.
Flying With a Medically Complex Kiddo
Two winters ago, our family made the unusual decision to fly across the country with the kids in the middle of RSV season. My grandfather had passed away after a long illness, and it was important to our family to join the many people who were gathering to celebrate his life and honor his memory. In order to do this, we faced many challenges including flying with very young children, having access to June’s medical equipment during the flight, and combating the risk of contracting a cold, flu or RSV in the cramped germ incubator that is an airplane. One idea we had was to snag the first seat in our section, reducing the number of people we are close to. That did not work, since we then had no underseat storage ahead of us, and we had lots of equipment to stow in arm’s reach. Another bright idea we had was to be the last people to board the plane, so we reduce the amount of time we are sitting in stagnant air before the plane’s air circulation/cleaner system is operating (the internet said this was a good idea). That backfired as well, as the plane was full to capacity and passengers were already having to check their carry-ons because the overhead storage was full. Along came us, with 6 carry-ons which were all essential. We stood awkwardly at the head of the plane isle while other people’s luggage was shuffled and checked to make room for ours. And also so that we could switch seats with some very kind passengers in our section since our spots at the front wouldn’t work for us. When we were seated, we discovered that the essential items we needed to have on-hand (oxygen concentrator, suction machine, and emergency bag) did not all fit under the seat in front of us, so one item had to be stowed above during the critical take-off and landing times, when we aren’t allowed to stand up. I waited very nervously for those few minutes wondering what would happen to me if June did have an emergency and I had to stand and take out our equipment during that critical take-off time. Thankfully we had no emergencies on either flight. Lastly, on the flight back, which I made alone with the two kids, Rowan had a loud, one-hour melt-down during which we collected some stares, some sympathetic grimaces, and even some gold fish crackers that a compassionate mom brought to us from another section of the plane. These things were all stressful, but not insurmountable. Despite the logistic adjustments during boarding and the tantrum, the kids were fascinated by the flight and we had a really wonderful vacation. While Greg and I enjoyed seeing everyone and having dozens of extra hands helping with the kids, the kids learned about their great-grandfather’s amazing life, met many relatives, played in snow for the first time, and witness vehicles driving on lakes.
Local Medical Care Is Inadequate (and everything else went wrong)
When travelling out of our own metro area, Greg and I always look up the nearest children’s hospitals in the event that June needs emergency care since most adult or non-specialty hospitals don’t have the experience and equipment to help her. During our recent road trip, we were encouraged that we would be close-ish to *the* best children’s hospital for trach patients in the country (Cinncinatti Children’s). But when June developed a bad stomach bug, we were 5.5 hours away from Cinncinatti. June was getting dehydrated vomiting every 30 minutes, so we decided to seek an IV at the local hospital while we evaluated whether we should make that 5.5 hour hike. My sister graciously took Rowan for the day while Greg, Miles, June and I went to the hospital ER in the mid-sized city close to the relatives we were visiting. As always, I warned the nurses that it is always very difficult to get an IV in June, and even moreso when she’s dehydrated. So, I pointed out the only two sites that are successful for IVs 90% of the time, requested ultrasound assistance in locating the vein, and asked that they not draw blood from an established IV. Some of the nurses were condescending and short with me, stating that they will use their judgment as professionals, and they proceeded to use sites other than those I showed (which failed), tried repeatedly without the ultrasound (which failed), got an IV with the ultrasound and then drew back for blood on it (which caused it to fail), and ultimately did not succeed in establishing an IV at all. The doctor prescribed June an anti-nausea medication which I refused because I knew from previous illnesses there is a life-threatening interaction between it and her heart medication. The doctor also ordered a chest X-ray but discharged us before reading it. In short, the ER trip was a torturous waste of our time. Thankfully, June’s vomiting subsided on its own without complications. But that was just the beginning of our misadventures.
In the hospital Greg and I ran down our cell phone batteries entertaining June and keeping family members updated. Miles and I left the hospital with plans to charge my phone in the car, pick up Rowan from across town then return to pick Greg and June up. But I discovered that my charger was not in the car; it was with the jumble of cords we had unpacked back at our lodging. As I pulled away from the hospital, my phone died completely. I didn’t have the address or phone of where Rowan was staying. I didn’t have a map or GPS. I couldn’t contact Greg. And after one or two turns on one-way streets, I didn’t even know where the hospital was anymore. So. I drove in “boxes,” always turning right onto one-way streets to stay in the vicinity until I could find something I recognized. Finally I recognized a street name, then a landmark, and then, by divine providence…Greg and June, who had exited the hospital and were headed for my former street-parking spot. And Greg’s phone had 22% battery life. So we rationed the battery to find our way to pick up Rowan and then to navigate to the place we were staying, 22 miles way. We watched the battery life dwindle as we traveled the dark rural roads. Near the end of the journey found ourselves on an unlit dirt road lined with 6-foot-high corn on both sides, and our headlights illuminated a fork in the road that wasn’t on the map. And then the phone died completely. If the horror movies are to be believed, we just knew we were all about to be devoured by zombies. I must add that despite the drama of it all and the danger involved (we were lost, without communication, in a deserted area with a sick, medically complex child), Greg and I laughed at the sheer absurdity of the situation, and the fact that we tend to have more than our fair share of wild surprises like this. Ultimately, we saw a light off to the right, so we decided to try that fork. This is another glimmer of divine providence, because the light turned out to be that of the relatives house where we were staying.
June got over the stomach bug fine with Gatorade and some phone consults with our doctors, and we went on to have a ton of fun on the trip. The boys actually developed the stomach bug as well just in time for our drive home. But we took advantage of the leisurely pace we had planned for the drive back, and since the kids mostly preferred to rest or play quietly while they were recovering, the drive home was actually pretty relaxing. We even enjoyed a stop at Dinosaur World without any gastric emergencies.
I hope that these stories of our shenanigans may offer some knowledge, wisdom and humor to other special needs families. I hope they don’t dissuade any special needs families from travelling if they’re considering doing so. Because despite these bumps, these trips have all been worth it. The memories we made far outweigh the various difficulties we encountered. These things have been good learning opportunities, too, and have helped us to prepare better next time. Which means that every time we venture out, we are increasing our ability, wisdom and mobility as a family. And collecting some good and unusual stories along the way.