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WE GOT THIS - Part 2

11/27/2019

5 Comments

 
Picture
In a windowless private room, isolated from the chaos of the Emergency Entrance to Cincinnati Children’s Hospital, Alex and I shared a quiet moment. Alex lay exhausted on a portable hospital bed alongside a wall of rainbows and animated stickers. I sat by his side on a hard plastic, metal-framed, guest chair. Our arms entwined along the edge of his mattress and our hands clasped by his hip. Contemplating the day, we stared absently into our sterile room, which included gray supply cabinets, a small sink, and a hand-sanitizer dispenser that had become our frequent friend.
 
After a deep sigh, I turned towards Alex and praised him. “You did it, Bud! I know it was hard. I know it wasn’t easy.” I raised his hand in mine and squeezed for emphasis. “But, you DID it! You should be very proud of yourself!”
 
He was, I knew. Still, it’s always nice to hear it from others. Alex turned his head towards me and then smiled with tired accomplishment and appreciation. “Thanks, Dad.”
 
We held eye contact for a while before his head turned back, his smile faded, and his gaze drifted back towards the fluorescent lighting shining softly above us. He seemed lost in thought, but I knew what he was thinking. I had seen that look before.
 
It had been a hard trip for Alex, out of his bedroom and into the Cincinnati Children’s Hospital. Thankfully, the ambulance transport had been smooth and uneventful. Thankfully, the six-person Emergency triage team had expertly slid Alex from his gurney to the bed in which he now reclined. Thankfully, he had endured back x-rays without too much discomfort. Thankfully, Alex had resumed his social skills with everyone he met and now rested comfortably in our temporary room. Away from the chaotic sounds of the Emergency triage, we awaited further direction of our journey to assess Alex’s back pain and Duchenne’s evil progression.
 
It was a long wait.
 
We passed the time with random conversations of movies, TV shows, and friends. As only fatigue and boredom can derive, we animated the accents (Indian, Russian, British) and wisdom of Alex’s many doctors who we knew all too well and who we would surely visit during the week. We enjoyed a late-night visit from Kaitlyn and John who kindly brought us dinner (Penn Station and Chipotle!) and helped Alex feel at ease with his hospital stay.
 
But, with every lull in imagination, pause in conversation, or visitor exit from our room, you could see Alex’s thoughts drift back into the void. You could see his thoughts wander and feel his grip loosen from mine as he stared into the light above and contemplated his new reality. 
 
When I looked up, it seemed I could see it, too.
 
After we had been transferred to our exotic, glass-walled room in the Transitional Care Center (TCC) on the 3rd floor of Building A, Alex again looked towards the ceiling. He was exhausted, but you could see his thoughts still brewing. This time, the questions pushed through. It was near 2AM.
 
“Dad, will my back ever get better?” he whispered with tired hoarseness from the long day and night. Normally a talkative kid, Alex didn’t say anything more. He didn’t need to. Fatigue ruled the moment and his tone, though the question rang loud and clear. I sighed in understanding, and equal fatigue, and then replied quietly.
 
“It will, Bud. It will. Just give it some time. The doctors will help us.” I answered him honestly, though admittedly sought to delay an expanded conversation. I knew what he was seeking. I knew what he wanted to hear. He wanted solutions. He wanted answers. He wanted to be pain-free again so he could enjoy life as he wants. As anyone wants. Was that too much to ask?
 
“But, what if it doesn’t?” He sleepily persisted. “What if my back will be like this forever?” You could feel despair creeping into his mind.
 
I did not respond immediately. His question was valid. Heck, I thought about it, too. What IF his back did not improve? What IF this is his life moving forward? What IF this was as good as it gets? I hesitated to reply as because I knew the length of discussion it would encourage. His questions required full attention. Alex’s closing eyelids told me the conversation could wait. 
 
“Let’s get some sleep, Bud,” I told him. “Tomorrow will be here before we know it.” Alex nodded and then asked for a hug as he always does before bed. I did, kissed his forehead, and then lay down on the comfortable fold-out chair beside him. I knew we had a hard week ahead. I knew his difficult questions would return another time. As I contemplated how to respond, the rhythmic pulse of his Bi-PAP lulled us both to sleep.
 
You see, physical challenges are only half the battle with Duchenne. Sometimes, physical challenges lead your son to boundaries of despair where he questions his health, his present, and his future. Sometimes, the questions are triggered by acute pain or prolonged periods of discomfort. Sometimes, they appear out of nowhere. Sometimes, you can see them coming. When they do, your son questions his self-worth, value, or even life itself, no matter how positive he may seem. He asks will I EVER get better? is THIS my life? or any other such difficult questions that weave into conversation when you least expect them and linger longer than you would prefer. Sometimes, the questions are uncharacteristic of him and surprising, like do I have purpose? do I make a difference? do I have value? Sometimes, they are downright frightening, like should I even live?
 
When you hear such questions, you realize Duchenne in all its rawness. You see the disease beyond immobility and inability. You know it beyond isolation and loneliness. You feel it beyond pain and despair. When you hear such questions, you clearly understand our shared humanity and impact upon one another. You tell your son he DOES have purpose, he DOES make a difference, and his life IS important, just as much as anyone. You remind him how much you love him and how much he is loved by others, some he may never know. You tell him not to worry and that you are here for him…always. You are thankful, so very thankful, for others who express to him the same.
 
Like the very next morning in the TCC. Oh, how Alex needed this! Oh, how WE needed this!
 
Our morning started with frequent visits from nurses checking vital signs and administering medications to respiratory therapists adjusting pulmonary settings and mask fittings to doctors making rounds and listening to lungs breathe. The day continued with dutiful smiles and friendly encouragements. But, they all seemed so professional, so determined and businesslike. Such is life in a hospital.
 
Then, while enjoying a late breakfast of bagels and cream cheese, we were greeted by a knock on the door and a tangled parting of curtains that covered our glass door. To our pleasant surprise, in walked Courtney, a nurse from Neurology who Alex has known for years! Those who have followed this blog know how special she is to Alex and how she is one of Alex’s favorite people at Children’s Hospital.
 
“Hey, Buddy!” Courtney (aka Sara Silverman) exclaimed after comically untangling herself from the curtains. “How’re you doing?” She wore a huge, genuine, smile on her face as she approached his bedside.
 
Alex beamed with happiness for seeing a longtime friend. Holding a bagel piece still in my hand, I backed away from Alex’s mouth and allowed the two to reconnect. Her visit had come at the perfect time!
 
“I heard you were in the hospital so I wanted to stop by and see how you’re doing, Buddy!” Alex smiled wide for her thoughtfulness and kindness. Courtney then turned and pointed to the still-ruffling curtains. “And, look who I brought with me!” We followed her direction as the curtains tangled and parted again.
 
In walked Kenny-Benny flashing an equally large and energizing smile! Kenny-Benny is a longtime friend of Alex’s from the check-in registration desk at the Duchenne clinic, and he always puts a smile on Alex’s face. Today was no exception! Perhaps the biggest ever!
 
“How ya doing, my man?” Kenny-Benny asked as he, too, approached Alex’s bedside and then extended his trademark fist-bump alongside Courtney. And so began a 15-20 minute visit that fueled Alex for the upcoming week. Pain? What pain? Duchenne? What Duchenne? THESE interactions were just what the doctor ordered and, arguably, validated every ounce of effort to get to Children’s Hospital.
 
The welcome human interactions didn’t stop there.
 
Throughout the week, Alex befriended three shifts of nurses, practitioners, respiratory therapists, physical therapists, cafeteria food delivery personnel, and linen custodians. Throw in fellows, interns, and doctors from pulmonary, cardiology, endocrinology, neurology, psychology, psychiatry, physical therapy, rehabilitation, and palliative care, and our room seemed like a revolving door of visitors, friends, and soon-to-be-friends. Each and every one brought a smile to Alex’s face and joy to his heart. EVERY ONE of them! No exaggeration.
 
For example, knowing Alex would not be able to partake in normal Halloween trick-or-treating, the TCC staff visited his room in full costume to brighten his day and bring him treats. Moreover, knowing his penchant to ask questions with every person he meets (and after hearing our stories of Halloweens past), Alex’s nurses constructed a large question mark symbol for Alex to wear on his chest as Question Boy! To top it off, a respiratory therapist named Curtis came dressed to the hilt as Captain America after Alex told him he looks like Chris Evans, the actor, just the day prior. These simple, caring, and genuine acts of kindness and love helped Alex carry a smile and a happy heart to endure the long week of tests, pokes, and prodding. More importantly to us, they helped to lessen the impact of life with Duchenne.
 
Yet, late in the week, we were reminded of why we were at Children’s Hospital as reality with Duchenne reared its ugly and unwelcome head…as it always does no matter how hard you try to ignore it.
 
Late on Thursday evening, Kristy and I sat in a small room, around a small round table, with Dr. Sawnani, Alex’s pulmonologist, and leading care doctor. He wanted to talk with us alone, away from distraction, to discuss the challenging road ahead. He wanted our minds wrapped around realities and certainties. He wanted us to know the path we were on. We discussed pulmonary and cardiac progressions. We discussed muscular and skeletal discomforts, many like Alex was experiencing now. We discussed impacts on families, relationships, and most importantly our son. We discussed advanced care directives and how best to promote them. We listened attentively, challenged where necessary, and acknowledged reluctantly.
 
The meeting confirmed conversations Alex and I had with psychology, psychiatry, and palliative care on how best to manage Alex’s pain and anxiety in the face of Duchenne. We welcomed the team-approach to life with the monster, that has clearly moved beyond mobility, pulmonary, and heart issues and into new territories of coping, understanding, and reality.
 
Then, perhaps fittingly, after a Friday morning cardiac MRI showed no significant decrease in heart function (most notably his heart’s ejection fraction, or EF) and an overnight Holter monitor showed good heart rhythm, our ability to cope with Duchenne was put to the test. Or, perhaps, Duchenne just wanted the last laugh, I don’t know. Either way, late Friday was simply as demoralizing as demoralizing can get. 
 
After a zoledronic acid infusion and testosterone injection to help strengthen his bones, a heavy pain med to lighten the load for the trip home, and a flu shot, Duchenne sucked the wind from our sails and kicked us to the curb yet again. We were soooo close to leaving. We were soooo close to getting home. We had been officially discharged, signed paperwork and all! Instead, Duchenne stabbed Alex in the back, literally.
 
Our final act was to hoist Alex from his hospital bed and into his wheelchair for the trip home in our accessible van. We had practiced the hoist with dedicated physical therapists throughout the week…each time with success! We had their blessing the hoist and lift were performed correctly for patients with such severe back pain! They encouraged Alex to push through any discomfort, though said it would be minimal with the heavy dose of pain meds he had been given. But, as we too often find out, Duchenne had other plans.
 
As we slowly hoisted Alex, millimeters at a time, searing pain and heartbreak struck hard. Barely inches off his bed, Alex screamed that that his back was breaking with the slightest of bends in the custom sling designed for delicate maneuvers. We stopped and considered whether to encourage him to push through the pain and move into his wheelchair. We were SOOOO close to going home!
 
However, his loud and intensifying screams told us to abandon all efforts and lower him back down…immediately! Although the physical therapists encouraged another try, we declined. I had seen that look of terror in Alex’s eyes before (the night before his Senior awards assembly that led to his missing his high school graduation). This pain was real! We weren’t going anywhere.
 
We were then readmitted to the hospital until we could figure out how to get him home.
 
That night, the emotional side of Duchenne kicked into gear and the questions flooded back. This incredibly positive young man looked me in the eye and wondered if his life held value. He asked if he had purpose. He asked if this new life in bed was all there was for him to look forward to. What if my back never gets better, Dad? What if I can no longer get out of bed? What if it only gets worse? What if…?
 
I could only listen, acknowledge, and offer support as best possible.
 
His pain is not just physical anymore. As he stared again at the ceiling that night, he looked inward and expressed his worry outward. While his eyes focused somewhere above, he stared Duchenne directly in the face. It’s a scary thing to do.
 
He hasn’t done that very often. Alex is such a positive kid that sometimes he doesn’t even think he has Duchenne. To him, he lives a normal life, just like any other kid, just that he sits or lays down more than others. Sure, he is aware of his limitations. Yes, he knows his body does not move like others. But, his mind is sharp as a tack. He laughs and jokes with the subtlest of clues and smiles wide and often as much as he can. Those who have met him will agree. His happiness is a beautiful reminder of how life should be lived.
 
But, when that smile fades and when that laughter is swallowed, what then? THAT pain was visible that Friday night. THAT pain was emerging to the forefront. THAT pain is what we experienced arguably the first time and certainly not the last. And, to a degree, THAT pain was not just confined to our son.
 
I went home the next morning and moved (with the help of strong and awesome neighbors) Alex’s bedroom from the second floor to the first floor, into the space of my old office. On Sunday, we called for another ambulance ride to transport him home. The trip was less chaotic than the one to the hospital a week before. No sirens. No pain. No stairs to navigate. A simple transition from gurney to bed, that now resides on the first floor. Once settled and in the comforts of his bed, in his new room, Alex summed up his perspective after a heavy sigh.
 
“Dad,” he said. “My everything hurts.”
 
“I know, Bud. I know,” I shared equal exhaustion and frustration and then encouraged. “But, we’re here for you! All of us. You, me, Mom, Kaitlyn, John…everyone...even our dog, Toby (pictured above). And, you know what…we got this...together!”
 
It’s all you can really say.

5 Comments

WE GOT THIS - Part 1

11/19/2019

7 Comments

 
Picture
It’s surreal to see your child in pain. He cries for you to stop his pain, but you cannot. His eyes desperately search yours for answers, but you have none. He looks to you for help, though yours seems wholly inadequate against his distress. When pain strikes, his breathing quickens, pulse accelerates, and eyes widen in acute and frantic awareness. You rush to his side and tell him it’ll be okay, we’re here for you, or other such encouragement as you search for the right words, though find few. Despite your encouragement you feel helpless, and despite your strength you feel weak. It seems all you can do is hold his hand, smooth back his hair, and whisper comfort until his pain subsides and normality returns, if at all. In quiet moments afterwards, you agree it’s not fair and wish, too, that pain would simply leave him alone. All the while, you silently curse the beast for wreaking havoc in his life yet again.
 
Our most recent struggle with Duchenne began innocently enough. Alex’s doctors had called early on a Monday afternoon to express their critical and impatient need to see him and assess his health. They knew Alex’s back had been causing him serious problems for years. They knew Alex’s pain and anxiety had confined him to bed for the last five months. Add in vital importance to assess Alex’s heart and lungs, and his doctors’ reasoning was solid.
 
They said we could not delay. They had a bed available in the Transitional Care Center (TCC) at Cincinnati Children’s Hospital and we needed to act before it would be filled. Flu season would start any day now, they said, and a hospital stay then would be dangerous for Alex because of his weakened pulmonary condition. We considered our options (though knew the answer) while they awaited a response. After some discussion, we agreed.
 
“Okay,” they said with relief and confidence. “Here’s how it’s going to happen…”
 
Upon hanging up the phone, I wondered if we had done the right thing. Although Alex lay in bed, he was comfortable. Although he has had terrible back pain all summer and fall, the pain had been manageable for the most part. Reclined, Alex was happy…very happy! He smiled often and laughed frequently. Like always, he enjoyed movies, video games, and visits from friends. We enjoyed our time together as a family in the cozy comforts of his second floor bedroom. What more could we ask? Why rock the boat? Was it really necessary to disrupt such comfort?
 
However, we also knew the importance of getting him out of bed and back into the real world. Alex is a social kid, and needs connections beyond Mom and Dad. He loves movies, restaurants, and bookstores. He relishes communication with anyone, anywhere, anytime. He befriends complete strangers and compliments everyone he meets whether they notice him roll alongside or not. He pets every dog he meets, without exception. He forms a fist to bump for everyone who takes the time. If you engage, you’ll be friends for life. Seriously.
 
We also knew that for Alex’s doctors to manage his chronic pain and anxiety, they he needed to see him in person. They could not safely prescribe medications without a direct evaluation of Alex’s overall health. Likewise, we knew the importance of monitoring Duchenne’s progression and adjustments to health care as needed, especially for his heart and lungs. Thus, we knew a visit to Cincinnati Children’s was vital for many reasons.
 
But that smile! Why pull it from his face?
 
We knew a trip to 3333 Burnett Avenue would certainly introduce logistical complications. Because of Alex’s severe back pain, he could not sit in his wheelchair and, hence, could not travel as we normally do in our accessible van. Thus, he needed ambulance transport on a gurney to protect his back. Because Alex’s bedroom was on the second floor of our home, he would need to be carried down the stairs on a stretcher (note: because he could not sit in his wheelchair, we could not use our elevator). This, we knew, would be awkward even if performed by seasoned EMTs, because Alex is a big kid.
 
After hanging up with Alex’s doctors, I imagined how the day would unfold. I visualized calling 911 as they instructed, and explaining our situation. I imagined hearing the approaching sirens and seeing the ambulance’s strange arrival to our home. I pictured EMTs lifting Alex onto a stretcher, carrying him carefully down the stairs, and then placing him onto a gurney. I imagined Alex smiling, comfortable, and chatting with each and every EMT as they rolled him into a waiting ambulance. I like your mustache! I could hear Alex say. I’m a big Star Wars fan! Do you like Star Wars? I’m sure he would ask in hopes of engaging in intergalactic conversation. I saw myself needlessly reassuring him of his care as they closed the ambulance doors. I envisioned following the ambulance on the 30-minute drive to Cincinnati Children’s. I imagined an overall successful trip where we could address his pain, get him back to using his wheelchair, and get an important update on his health.
 
But first, I had to break the news.
 
“Hey Bud, today’s the day,” I whispered to Alex about an hour after speaking with his doctors. He was in a deep sleep and didn’t immediately respond, so I gently shook his shoulder and then repeated my unwelcome announcement over the rhythmic sound of his pulsing BiPAP machine. Alex’s eyes opened with disorientation that transitioned to acute awareness.
 
“Nuh-uh,” he voiced in a quiet yet nasally tone as his eyes widened.
 
I reluctantly nodded the reality and grimaced with understanding. Alex’s resistance was immediate.
 
“Nooooooo,” he pleaded. “I’m not ready!” His brow furrowed and his head shook in quick bursts of denial, each one hopeful to stop the plan that would begin right after lunch and after taking his prescribed pain meds for the trip. Tears soon welled within his eyes, crested, and then pushed down his cheeks as he mounted his resistance. Today was the day he feared, though he knew it would come.
 
He knew his doctors needed to see him. He knew Mark from Social Work called every week to help with Alex’s anxiety. He knew Beth from Cardiology phoned to voice her support for a visit. He knew Dr. Sawnani needed to see him to assess his lungs and breathing. He knew Michelle in Palliative care called often to check on his pain.
 
But, it seemed, we always found some reason to postpone – Alex just wasn’t ready or we had schedule conflicts. The Friday before, we postponed a Children’s visit because we had a house-full of family visiting from out of town. The week prior we postponed because Alex was just not ready. Before then, the same reason. Although, it seemed there was never a good time, a pattern was obvious to all.
 
Now, finally, a plan had been set in motion.
 
Alex was to go through emergency admittance and then move to the TCC for an inpatient stay and evaluation lasting up to a week. There, he could rest comfortably while doctors from neurology, pulmonary, cardiology, endocrinology, rehabilitation, physical therapy, social work, psychology, psychiatry, and palliative care could visit, evaluate him, and provide a care plan moving forward. There, Alex could get his x-rays, blood tests, CO2 monitoring, zoledronic acid infusion, EKG, Holter monitoring, and cardiac MRI. There, doctors could evaluate Alex’s current state of health and develop a plan for his comfort and well-being with an ultimate goal of getting him out of bed.
 
Still, Alex’s worry compounded. Although he was in pain, he hoped the doctors would, instead, come to him. Why can’t they come here? He cried. Don’t they know I can’t get out of bed? He pleaded. Don’t they know how much my back hurts? He begged. But now, with a plan in motion and squarely beyond his control, his eyes expressed fear as if he knew the outcome.
 
As we would soon learn, his fears were not unjustified.
 
His first call for help came when we heard the sirens echoing in the distance. It had only been a few minutes since I hung up the phone when emergency sirens first penetrated our walls and then grew louder with each passing second. Alex looked at me in desperation. Noooooo, he expressed with watery eyes. Not today! Not now! I’m not ready!  I tried to lighten the mood and tell him not to worry and that we needed to do this.
 
“Dude, we can’t wait any longer,” I shrugged as if everything was out of my control. The sirens grew louder as they entered our neighborhood. I could see Alex tense up.
 
“Dad, pleeeeease!” He begged as fear gripped him hard and tears fell.
 
I told him it was for the best and then held his hands. We maintained eye contact a while longer before I told him I needed to go outside and meet the ambulance. “We got this,” I told him. “You can do it!” I encouraged. I squeezed his hands and then walked out of his bedroom and down the stairs. I unsuccessfully commanded our dogs to stop barking as I stepped outside to meet the first-responders. As I briefed the EMTs, I imagined Alex waiting upstairs alone. I could feel his anxiety. I could sense fear.
 
Moments later, two EMTs stood with me at Alex’s bedside and evaluated the challenge laying before them. As Alex chatted nervously, they considered how best to move an immobile 200+-lb body out of a second floor bedroom, down turning stairs, and then outside to a waiting gurney and ambulance. They realized their limitation and radioed for assistance, leading to the arrival of a hook-and-ladder fire truck and another fire vehicle along our now crowded curbside. Concerned neighbors stood outside their homes. The entire scene seemed overkill, but there was really no other way to get him to the hospital.
 
Alex nodded to me and then held his breath as five EMTs rolled him onto a stretcher. The roll was rough and elicited Alex’s first cries of pain. “Ow, ow, ow, ow!” He warned and then pleaded for them to stop. He asked to be rolled back as his back pain intensified. They continued as if they had a job to do. Within seconds they had him strapped onto the stretcher and then lifted on the count of three.
 
Alex looked to me in panic. Everything was moving way too fast for him. I reassured him he will be fine.
 
Alex begged the EMTs to take him back to his bedroom. He feared what was to come. He turned his head again to me, but our visual connection fell apart amongst the crowd of five EMTs carrying him on a stretcher. As they twisted around corners and carried him down the stairs feet-first, he screamed in pain that his back was hurting and that his already-turned-inward ankles were breaking against the stretcher due to gravity and steepness of the stairs. Alex pleaded for them to readjust his ankles, but they continued their awkward, step-by-step, march down the stairs. The descent seemed an eternity, as did Alex’s screams of pain and cries for help with each step. I stood helpless and watching from the base of the stairs. Our now silent dogs stood by watching, too, as their concern for Alex grew.
 
Once outside, they placed Alex on the concrete sidewalk to readjust their grip. He promptly screamed in pain that his back was breaking against the hard concrete. The EMTs promptly lifted the stretcher and placed Alex on the gurney. Alex looked to me with tears and pleaded. “Can we go back, Dad? Pleeeassse! It hurts! It hurts! What if my back completely breaks on the ride?” I assured him he was in good hands with the ambulance crew and they would drive safely. I set up Alex’s sip ventilation for him to use along the way, if he needed. I gave him a full hug, kissed his forehead, and then told him how proud I was that he was doing this. I told him I know it is hard, but he is doing it! Alex sighed deeply, gave a quick nod, and then flashed a proud half-smile between his tears before I stepped out of the ambulance.
 
While the ambulance pulled away, my mind raced for what had transpired and for the pain our son had endured. Should we have just stayed home? Should we have let Alex’s back heal in bed? Should we have pushed back against the doctor’s insistence to see him? What more did they need to know than they already knew? Duchenne sucks. Period! Why put Alex through such pain to confirm that understanding? What would we gain?
 
My emotions were a mess watching the ambulance drive away, and I could barely speak with concerned neighbors who stepped forward and expressed their support. I dutifully answered their questions to what was happening, though stood eager to disengage and jump in our van before my tears crested. Once in the van and driving to catch up with the ambulance, they did.
 
What had we done? Hours before our son slept peacefully. Hours before he had comfort. Our little family had normality. Now, we had pain, hard pain…and the week had only just begun.
 
God, how I hate this disease.
 
TO BE CONTINUED

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