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Higher Elevation Caregiving (or Sucking Wind on Mountain Tops).

When I was in high school, I attended a summer camp for cross-country runners. It was up in the mountains at a big winter ski resort. We stayed in small team groups of 5 or 6 kids in the ski chalets surrounding the main lodge. During the day, we would be sent on various mountain trail runs. The scenery was beautiful, as was the exuberance of other young athletes. We ate our meals together in the lodge and played horseshoes and other games in the afternoons. There were competitions and a camp dance. We hiked, we played, we ran.


It was a memorable experience.

I attended a lot of different summer camps as a kid. This camp was head-and-shoulders above the rest.


Upon arriving at the ski lodge on the first day of camp each year, after getting settled in our assigned accommodations, our teams would meet outside to receive direction for our first activity. On that first afternoon at camp, just hours after arrival, we were sent out for a "short" distance of several miles at an "easy pace." Slow jogging was okay. Walking was permissible on this run.


Why though?


We were trained long-distance runners. While not yet near our peak physical shape at that point in the season, we were still young, athletic, and well beyond the need to walk any part of a distance shorter than a 5K. And yet, our otherwise hard-ass coaches gave that permission.


Elevation.


Despite our young, healthy and physically fit physique, camp coaches wanted to give us time to acclimate to running at a higher elevation.


At our base camp, we were standing approximately 4,500 feet above sea level. The ski-lift summit rose to about 6,500 feet. By comparison, my team had arrived from our hometown in central Washington that sits at an elevation around 1,000 feet above sea level.


Despite the climb, I never personally felt the difference in altitude change. If anything, I felt better, faster, stronger running through the cool, fresh mountain air. It was a breeze!


But I remember the experience of that first camp run and the brief mention of the bodily impact of elevation change.


*****


While my son was born in Seattle, a city at extremely low elevation, our family home (at that time) remained in central Washington. The 1,000 ft elevation of our hometown never posed any issue. However, the frequent trips back and forth across the mountain pass separating our home from the Seattle area did raise alarm. (That particular mountain pass, known as Snoqualmie, has a peak elevation around 3,000 feet.)


Every time we trekked across the mountains, our son would show symptoms of fatigue and lower blood oxygen levels. Many times, his oxygen levels would drop below our standard "green zone" of 92-100% saturation, requiring us to bleed-in oxygen to his ventilator from a large cannister, which we positioned next to his car seat. This would effectively raise his oxygen levels back up to our "comfort zone" of 97-100%.


It was never a huge problem because we were well aware of the cause. We could peer out the window of our vehicle and visibly witness the mountains passing beside us.


And sure enough, as we began to descend the pass, our son's oxygen saturation levels also leveled out and his need for supplemental oxygen decreased to his baseline at room air.


As he grew, too, his physical resiliency to changes in elevation also increased. Today, crossing that same mountain pass between Seattle and central Washington does not cause him any respiratory distress. He has not needed supplemental oxygen at those elevations for at least the past several years.


In fact, changes in elevation had become such a non-issue for us that it nearly fell off our radar entirely.


*****


When we began planning a road trip earlier this year from our home in Seattle to Nashville, Tennessee, we did discuss the possibility of "altitudinal challenges." Our route would inevitably take us across the Rocky Mountains at some point, though, we honestly did not give it much consideration. Our son had not shown any difficulty with elevation changes in years.


Luckily, we always carry a few oxygen cannisters with us in case of emergency (in addition to a large oxygen concentrator). We are prepared to respond to his needs regardless of the cause.


We stayed two nights at a campground outside of Salt Lake City. Our son was managing the trip fabulously. (He is a fantastic little traveler!) But, each night, when he fell asleep, we noticed his ventilator alarm sounding more frequently, indicating that he was taking shorter, more shallow breaths, and his oxygen saturations hovering just slightly lower than normal. Neither issue signaled an obvious red flag. He was fine. His vitals were fine. Everything was still entirely within "acceptable" medical ranges. We assumed he was just extra tired from the long travel days and the excitement of seeing new things in new places.


We gave a collective sigh of relief when we crossed the Utah-Wyoming state line. It Utah, we could see the mountains around us. We knew the elevation was higher than our normal. But along the road through Wyoming, there was not a mountain in sight. Not one. There was no obvious visible indicator of higher elevation.


*****


As we drove, I read that a significant portion of Wyoming is classified as a "high desert." That made sense. The terrain certainly resembled that of a desert -- flat, sagebrush and scrubland.


I also grew up in a "high desert" climate in Eastern Washington. It was hot and arid and decorated with sagebrush, but not particularly high in elevation. The emphasis of "high desert" was on the desert part.


So, it never crossed my mind that the high desert climate of the central plains of Wyoming would be any different. But clearly, in Wyoming, the emphasis in their "high desert" classification is placed squarely on that first descriptor.


*****


In hindsight, the problem was obvious.


But at the time, elevation did not even enter our minds as a probable issue when we noticed our son's oxygen levels steadily declining the farther we drove into the state of Wyoming. By the time we reached Laramie and set up camp for the night, we had our son full-time on his ventilator with a steady flow of oxygen.


We were scratching our heads and growing ever more anxious. Was he getting sick? Is this the beginning of a coming seizure?


Without supplemental oxygen flowing through his ventilator, his oxygen saturations were hanging between 85-92%. Not dangerously low, but far from stellar, and undoubtedly irregular for him.


I asked my husband to call our son's pulmonary team at Seattle Children's Hospital around 10 pm that night. We requested a call-back from the overnight on-call attending doctor.


When she returned our call, we quickly rattled off the details of the situation. We told her we were traveling and that our son was showing respiratory symptoms.


The issue was readily apparent to her.

And it's almost laughable now. She asked: "Do you know what elevation you're at in Laramie?"


*Lightbulb*


For those who, like me, were also unaware: The city of Laramie, Wyoming, sits at a WHOPPING 7,100 feet above sea level. It is a ridiculously high elevation city, and none of us are acclimated for that bizniz.


She reassured us that, given everything we described, we could place blame on the elevation of the mountain region.


Apparently, she said, elevation change is an issue often overlooked by medical parents when traveling with pulmonary kids. And really, we had done everything right. We had him on his vent with oxygen running to maintain his vital saturations. Whether his oxygen had dropped due to illness or elevation, our first response is the same: ventilator and oxygen; then, reassess the situation to determine next steps.


Still, in my mind this was a total facepalm moment. After 5+ years of caregiving, I felt like we had kicked ourselves back to amateur hour in medical parenting.


Even if our medical response was correct, I feel like my medical problem-solving skills had failed me. And in that, I felt terrible. I should have known.


*****


Our son's doctor was right in blaming elevation for his respiratory distress.


We woke up early the following morning in Laramie, Wyoming, packed up our campsite, and hit the road. We made good time pushing East into Nebraska, and our son's oxygen levels slowly stabilized as we continued toward lower ground. I Googled and called out the decreasing elevation with every city we passed.


My son fell asleep that night in North Platte, Nebraska (~2,800 ft. above sea level), as if nothing had changed, while my husband and I discussed strategies for better addressing oxygen deprivation on our return trip. (The answer: A small mobile/travel oxygen concentrator, as opposed to oxygen tanks that require frequent replacement.) You can be certain that we will have a solid plan in place and the equipment to make it happen.



It irks me that I did not immediately identify elevation change as the primary contributing cause for my son's respiratory challenges. I hold myself to a higher standard, and elevation change seems now like such an easy guess.


As caregivers, as people -- all of us -- overlook things at time. We make mistakes. No caregiver carries a perfect scorecard. Hell, very few of us have any formal medical training. We learn as we go, and we pick up knowledge as new situations arise.


We learn to give ourselves grace because we have to and because we need it.


I hold myself to a very high standard in my capacity to provide medical care. I am still working on allowing myself an equally high degree of grace.

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