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Another kind of vacation...
March 16, 2016
Elliott is well but we are so exhausted. We just returned home from a vacation, cruising, with, Bubbie, Grandpa and Auntie Shana.
It was a real adventure and we want to share with you what vacationing with a child as medically complex and fragile as Elliott. Preparations are incredibly complex and much as our everyday life, vacations present constant challenges but give us the space to savor how uniquely sweet our life is.
It’s useful to preface this tale with an understanding of the “baseline” of our lives. With how fragile Elliott is, we rarely leave the house more than a few times a week and that is primarly for Elliott’s doctors and therapy appointments. It’s not just the vast array of equipment and supplies essential for Elliott’s survival that we must travel with, but the high risk of Elliott’s aspirating (and getting pneumonia) from even a short while in his car seat or wheelchair that deter outings.
So, planning a family vacation was a great leap of faith stemming from Bubbie’s constant desire to see us get out and enjoy. We recognize just how lucky we are to have her, Grandpa, aunties and so many others in our lives. Not only will Bubbie and Grandpa not leave town for more than a few days because they know how heavily we rely on them, but they want to vacation with us, spend time with our kids and attempt to help us grab small pockets of relaxation here and there. We sailed out of Baltimore to avoid having to fly with Elliott, the thought of which scares us - given all the equipment, preparing the airline to accommodate a special needs child (problems arising from traveling with kids like Elliott have shown up in the news over the past year or so, and not in a good way!), and the challenge of positioning Elliott so that he doesn’t aspirate while in transit. The attraction of traveling just one hour to the port and ending up somewhere warm, without flying, was a huge draw.
The preparation was herculean – negotiating with the cruise line to accommodate his machines and prepare the staff and medical crew, acquiring and packing up all the needed regular and emergency medications, formula, medical equipment, back up supplies, machines, a special bed, positioning tools etc. We barely fit it all into 3 cars!
The first real medical challenge began just as we approached the port – with Elliott in respiratory distress. So instead of boarding the ship, we spent an hour administering emergency treatments. Most of us worried whether this was really a risk worth taking.
Elliott stabilized though and we decided that it was safe to board the ship, hoping for the best. Leaving behind steady nursing care, the 5 adults traveling had to arrange a rotating schedule of 24 hour care for Elliott (and Vega) to support his near constant need for medications, respiratory treatments, feedings, and therapies. It was a true family effort to pull this off.
While it was intense and exhausting, we all experienced many special times. Elliott was quite a hit as we improvised a mobile “bed” for him in a folding wagon that ensured he could be on his side and drain out the drool that he might otherwise aspirate – and he delighted us as always with his glorious smiles. Maybe he too enjoyed the change of scenery, the ocean air, the sound of the waves, and the warm sunshine and breezes, things that every child should get the opportunity to experience. He can’t run around on the beach, build sand castles and jump in the water, but he was able to enjoy some new things.
Sadly, we experienced another low, when after taking Elliott to the beach (the only time we really managed to get him off the ship) he experienced another terrible respiratory challenge, likely the result of aspiration. He was desatting (poorly absorbing oxygen into the blood) and spiked a fever. If at home, we very well might have headed to the ER, but as always when this happens, we quickly applied every emergency intervention we had available. Fearing pneumonia could be setting in, we started him on a course of antibiotics and luckily, Elliott, ever the fighter, turned things around after a few hours of intensive intervention and oxygen. We very happily escaped having to get Elliott Medevac’d off the ship.
While many might think we were crazy to go to all this trouble or take these risks, for us, these opportunities to be together as a family, give Elliott new sensations and experiences, and have a brief chance to break away from the daily grind are worth it. We did our homework, left prepared for any possibility, and luckily, came home having had an adventure. Elliott’s fragility has helped us all be grateful for every smile and opportunity we get to give him a new experience. We not only got out of the house (!), but went to several warm and beautiful ports, took Elliott in the ocean, strolled under the sun on the deck, danced, enjoyed lots of music, lots of new friends were made and, of course, Elliott got lots of hugs and kisses from loving family all around him. John and I worked in a few moments of relaxation here and there and most importantly, we all made some wonderful memories as a family.
To see the adventure, you can check out our family album here.