Scott Watson is an Associate Division Chief, Division of Pediatrics Critical Care Medicine, Professor of Pediatrics at the University of Washington School of Medicine, and researcher at Center of Child Health and Behavior and Development.
Scott conducts research on the epidemiology and long-term outcomes of severe illness in children. He is a lead and collaborator on the studies that ask questions such as “how many kids receive care in PICUs, what types of problems do they have, how they are treated, and how they recover after going home?” When asked about the findings of these studies, Scott replied that they have found that “tens of thousands of children receive critical care for severe infections (sepsis) and severe breathing problems (respiratory failure) in the US each year. While many children recover quickly after they go home from the hospital, some children and their families take a long time to recover”.
“Receiving care in an ICU can be stressful for everyone in the family. If you have any questions about how things are going for your child or anyone else in your family, don’t hesitate to get in touch with your or your child’s doctor, as well as the doctors that took care of your child in the ICU. There are many people who can help.” –Scott
Navigating the winding path home
It is surprising that what I remember most happens after we exit those sliding glass doors. As we leave behind the beeping and buzzing and bright lights and sleepless hallways, we walk toward relief and renewal and the road to hope and recovery. Fleeing the scene, we navigate our way home with a potent mixture of exhaustion, desperation, shock and sheer delight in our freedom. Feeling like escapees, with crumpled precious discharge papers in hand, we run for the door before anyone changes their mind... For this is when the real healing will happen.
Standing in the parking lot, we are finally truly alone. We have reviewed the complicated home care instructions, packed up our overflowing bags of post-op supplies, thanked the inspiring nurses and waved goodbye to the security guard. This moment is the ultimate handoff. We are now the ones “on call”, 24/7.
The true healing begins when we stand alone, without medical supervision for the first time in weeks. Without the watchful eyes, the careful monitoring, the constant connection, the button to press for instant help. It dawns on me that the ‘adults’ have left the building and we are now the caregivers in charge. Scary.
Crossing the threshold through our front door, the first order of business, post-PICU stay, is always the same: preparing our son’s “lavender bath”. I don’t know when this ritual first began or whose idea it was, but each time we come home from the hospital, we adhere to the same set of customs. Something about the scene soothes us both through the transition back into family life. The calming aroma, warm bubbles, my son’s small fragile body entering the cleansing waters. We begin the ritual of scrubbing off the sticky pieces of tape and stubborn glue, the tell-tale roadmap of pokes and probes, IV sites and old leads. What we are really washing off is the fear, the vulnerability and the pain, as we re-enter and immerse in the simple comforts of home. Finally - thankfully – we are sliding into home base, with the umpire yelling “Safe!” at the top of his lungs.
But re-entry is never quite that simple In the complex juggling act of home-life after a PICU stay, there is a lot of catch-up to play, and always some ‘newness’ to get used to … acclimating to our “newest normal”, making friends with brand new stitches and scars, incorporating the invaluable lessons learned. Although we happily grab the scissors and snip off my son’s hospital bracelet as soon as we are permitted, I have a habit of leaving my matching hospital bracelet on for as long as I feel it is necessary. Sometimes it is hours, sometimes days, sometimes even a week. I leave it on for as long as I am still “processing” the hospital stay, to remind myself that there is emotional work to be done and to allow myself permission to live with those feelings honestly. For a while, part of me needs to still be living enveloped in the world of chronic illness. I am not yet ready to move on. I leave on this identity bracelet because my identity with illness still feels at the forefront. The day I reach for the scissors and snip off my own bracelet is the day I know I am ready to move forward once again. That is the day when illness takes its place in the backseat of the car, no longer at the steering wheel, but not in the trunk either… Still ever-present, but no longer all-encompassing.
Reconnecting with our parental role: Control is lost & found
One of the most difficult challenges I faced in the PICU was my loss of parental control. In that space, our son had a world-class medical team thoughtfully making all decisions together. Thanks to our hospital’s family-centered care approach, we as parents worked in direct partnership and were treated as full members of that team. But in truth, as a parent accustomed to “calling all the shots” in my child’s normal world outside the PICU, this loss of my parental control created a deep void and an uneasy sense of restlessness – and, at times, even jealousy that these strangers could provide the expert care my son needed better than I could at that moment in time. That felt so wrong and counter-intuitive that my internal “Mama Bear” wanted to stand in the hallway and ROAR, or better yet, gobble up some of the younger, juicier residents for lunch…
As a parent, witnessing my child in pain and struggling with illness felt maddening. The reality of my vulnerability and utter helplessness to fix my child’s problem was terribly frustrating. How I longed for a promise that everything would be okay; a guarantee that these miracle workers would do their magic and allow me and my child to walk out the door whole again. It was so deeply challenging to find a place to put all of my fear and anxiety, and somehow manage my own feelings in order to meet my child’s needs. Remembering that I had a very unique, valued, precious area of expertise -- in one of the most important areas of healing -- was key. I knew how to comfort my child best of all…. the songs that were right to sing at just the right moment, the jokes that could bring a smile even in the worst blood draw, the instances when saying absolutely nothing and sitting quietly -- but very, very closely -- were all that was needed, the afternoons that required closing the door tight and shouting at the tops of our lungs “This Suuuuuuucks!!!” with reckless abandon… Only I knew how to select, offer and sensitively administer those particular high-powered medicines.
Coming home from the hospital, we instantaneously return to being “parents with full benefits” once again. The control is ours, and with it comes sole responsibility for our child’s health and well-being. A dream come true, but also an overwhelming task ahead. Sigh.
Juggling all of these different, powerful feelings was never easy, and there is no single, one-size-fits-all recipe. But I always found it helpful to check in with myself often and to focus on “reconnecting” with each new piece of our ever-changing life puzzle.
Reconnecting with our child: “I know you”
With each new surgery and hospitalization and hurdle, the only constant was change. Each time, finding a way to acclimate to our ‘newest normal’ was no small feat. Just when we got used to one new element of the illness, another complication would introduce itself and sit down to join us at our dinner table. My one goal became to connect with our son at his deepest core, with who he is at his very soul. In that way, all the other paraphernalia such as hearing aids, eye patches, glasses, facial reconstruction, leg braces, fluctuating medications… all just became moveable accessories, interchangeable parts of a steady constant whole of a being. This child of mine – with his fierce tenacity, wicked humor, wisdom beyond his years and powerful determination to move past healing toward living – would remain true no matter what was thrown at us.
Reconnecting with siblings:
Because our son is a twin, reconnecting with his brother was always his first and most important order of business. That was his biggest step toward successfully transitioning back home. He never had to relay the whole story or draw him pictures or walk him through a day-by-day account of his PICU stay. It was enough for them to be in each other’s space and feel the comfort of each other’s presence. Those first days back home, I might notice them sitting a little closer to each other, lingering a little longer with each other, catching sidelong glances checking each other out, just to be sure of one another’s place in the world. But that was time limited, and the rambunctious restoration of routine returned miraculously in the blink of an eye.
For me, returning home and being able to hold both my boys once again in my arms was the sweetest relief. Truth be told, if I was awake and worrying in the middle of the night, it was never about our son who carried a big diagnosis. Without question, he was being followed like a hawk by a top-notch medical team that would allow nothing to slip through the cracks. But his twin brother, who has “no medical complications” of his own -- except for the reality of bearing witness to his twin brother’s lifelong illness – exactly WHO was watching HIM like a hawk? The question that haunts me always: what price do the siblings pay and do we know how to ease their worry?
Reconnecting with extended family and friends:
It can be exhausting to retell the story a million times, address the unanswerable question “how can we help?”, and keep up with soccer schedules while slipping back into life’s daily routines. When the PICU interrupts your world and shakes up your family’s snow-globe reality with blinding flurries, there is no way to return back to the calm, quietly and easily. Your whole world has been stirred up and there is still debris obstructing your vision. Give yourself permission to spend time with people who are naturally nurturing and giving, people who can offer you the space and time you and your family need to heal. But here comes the hard part: give yourself permission to take a break from those folks who may not know how to offer you the care you need, and who need more from you than you can give at this challenging moment in your family’s life. Give yourself permission to take care of your family first. Which leads us to….
Reconnecting with ourselves:
You know what? I think that I was the one who needed that warm lavender bath the most. Because what I forgot to do when we walked inside our home was reconnect with my own self. Having lived the sketchy PICU lifestyle of minimal sleep, scary food choices, lack of showering, zero privacy, no exercise and carefully scheduled bathroom breaks (!)…. some serious “me” time would have served us all well. But in that moment, it seemed impossible to care for the life of another – so small and fragile and vulnerable – while taking the time to care for myself. Had I understood then that taking loving care of myself was one of the most important things that I could model for my kids, I may have tried a little bit harder. And perhaps gotten into my own lavender bath a little bit sooner…
Over scrambled eggs, I asked my son at breakfast this morning what advice he would have for parents who are bringing their children home from the hospital after a stay in the PICU. I asked him to share some words of wisdom from the kid’s unique perspective. His answer surprised me. He looked up, quietly thought for a moment, and then shook his head. “You know, Mom, I really don’t remember all that much about my own experience. And I certainly don’t remember anything at all about your experience. Sorry - I got nothing.” And I smiled, relieved by his incredible answer.
I remember so vividly all the concern and unanswered questions and anxiety about how this will impact my child, how these medications will effect his well-being, how his being in the PICU will impact his future? My son’s chronic illness is with him for life, and there is no denying it has shaped, colored, and influenced who he is in so many ways. But for today, at this moment, my 18-year-old mature and reasonable college-applying son is telling me he’s got “nothing”. Which is just as I would like it to be. I know that there are no magic wands and that illness leaves its indelible marks and memories on our family’s collective psyche. We parents carry close to our hearts our war stories and deep scars, our tired chests decorated with medals of honor and badges of courage. But the last thing we want is our kids carrying these stories as burdens with them, dragging around their diagnoses and medical histories like duffle bags of dead weights. Illness may leave a large imprint on our days, but it does not have to limit our dreams or define our inner selves. Perhaps all those lavender baths worked after all. Miraculously, we were somehow able to wash away pieces of the sticky hospital residue and let it slip down the bathtub drain in a swirl, leaving us fresh and renewed, ready to take on the best of what life has to offer next.
Lisa lives in the suburbs of Philadelphia with her husband of 25 years and their ‘soon–to-be launched into the world’ eighteen-year-old fraternal twin boys. One of her sons lives with Crouzon Syndrome and Hydrocephalous and their family has adjusted (on a good day) to living with these complex chronic lifelong conditions that require multiple surgeries and hospitalizations, PICU stays, ongoing treatment and frequent clinical visits. Born into a cancer-cluster family, Lisa has navigated through the palliative care journey with three of her immediate family members. She uses the invaluable lessons that she gained from those pivotal experiences to inform, shape and guide her professional work as a family and patient-centered healthcare specialist. In an attempt to catch her breath, Lisa delights in visiting the ocean, listening to blues guitar, finding healing humor in every day life, and practicing mindfulness meditation. High quality dark chocolate helps as well.