Parting is such sweet sorrow. Never before had I understood this phrase quite to this point. The title is a reference to one of my favorite TV series finale...MASH. This show highlighted the trials and tribulations associated with a medical unit during the Korean War. Our time here at Seattle Children’s has come to an end and we are discharging in the morning. We’ve been inpatient for 134 days up to this point and Harrison is medically stable and well on the road to recovery. We entered this hospital thinking there was a very real chance he wouldn’t come home or ever be able to express his personality or even move again. We were literally planning his funeral. We were in a new place with scary alarms, beeps, lights, and constant stress from the steady stream of specialists, therapists, and technicians. The concern for us developing “ICU psychosis” was a very real concern due to the overall lack of darkness from living in a unit designed for the most fragile cases and need to act at a moment’s notice. Privacy was minimal and interruptions constant. Sleep was fragmented and the stress kept growing while we waited to finalize the plan for treatment and see how he responded. To compound matters further, we were trying to “enjoy” and trust in our pregnancy. The fear of having a second child with complex medical needs was terrifying or even experiencing a second miscarriage. Add in a global pandemic and we were at our wits end. MariClaire and I were well aware of the statistics facing couples dealing with similar situations and made a mutual decision to draw strength from each other and to give each other grace. It wasn’t easy…we fought, we cried, we worried…all the while realizing that this was a pivotal time in our marriage. We were either going to see the end or double down and come out of this stronger than ever.
Thankfully we were supported by the most caring, authentic, and understanding medical team we could ever hope to meet. From the excellent nurses willing to build relationships with us to ease our journey while also giving Harrison their all, charge nurses prioritizing our primary list for continuity so we could sleep reassured Harrison was being cared for by someone familiar with his situation, our diligent/loyal care coordinator holding our hand as we navigate the murky waters of scheduling home nursing and transitioning to the terrifying prospect of discharge, the many therapists willing to experiment with new things/techniques to help Harrison rehab, to the many techs reassuring us what they were doing and why with patience and kindness.
Harrison arrived broken and is leaving stable and healing. He was in spinal shock unable to smile, vocalize, breathe effectively, or move any of his limbs. He now is able to breathe on his own for up to 3 hours a day safely and consistently. He can move all of his limbs with intention, albeit minimally. He is learning the foundations of communication with the very exciting Eye Gaze technology. He has custom orthotics to support his healing in his neck, hands/wrists, and legs. He has a fully tricked out wheelchair that will safely hold him and he generally enjoys being in it. He is starting work on using a stander to help with easing some problem areas in his hips due to his underlying syndrome. He is on the new experimental medication for his syndrome and among the first in the US to receive it. I write all of this to show how far he has come and how this injury didn’t really sideline him.
Harrison is one of the toughest kids I’ve ever seen. His spirit defies reality and he truly is happy at baseline. He has the biggest smile and can say so many things to you with his eyes if you have the desire to “listen” and learn his cues. We often remark that Harrison was brought into this world to teach others. He is masterful at teaching patience, celebrating small milestones, raising awareness, and challenging preconceptions about abilities. He is so strong and able to endure more than most adults, all the while smiling with pure joy. He is still very limited by both his underlying syndrome and his spinal injury, but he seems to be hell-bent on proving specialists wrong and doing his own thing.
It’s hard to imagine what tomorrow will look like but we know for sure that we’ll see a team of proud professionals happy, yet sad to see us go. Harrison’s light permeates the unit. He made everyone work that much harder, not through necessity, but because they wanted to ease his road to recovery. He made people slow down and celebrate those tiny victories that are so easy to miss. The love we’ve felt from our team is palpable. We’ve made deep friendships through our darkest of days. We tried to bring understanding, acceptance, joy, and encouragement to our team. We are emotionally invested in their well-being and will miss seeing them every day. We know that they are here for us, waiting for when we need them. They’ll spring into action again like the heroes that they are. These are unsung heroes who deal with so much more than just “patient care”. They care for the family, advocate fiercely for their patients, and help act as a teacher/resource guide as you navigate through the various floors. The sacred bond between caregiver and patient is just that…sacred. There is nothing like it. There aren’t enough gifts or words in the world to adequately thank someone for saving your child’s life. We are humbled by this knowledge and will eternally be grateful.
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The video below was a spontaneous trip late at night through the unit embarrassing the Bajesus out of my wife. :D
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