The Children’s staff are incredible human beings and many are among the smartest people I know. They do their utmost to make our visit as positive and upbeat as possible. They are compassionate beyond words and devoted beyond compare. Although they have not yet solved the monster Duchenne, they make a potentially depressing visit something beautiful to behold, especially with a boy named Alex.
The annual visit is like a mini-family reunion of sorts, full of sincere smiles, laughter, and caring. The doctors, nurses, and administrative staff, even the cafeteria workers, guards, and janitors, welcome Alex with heartfelt smiles, waves, and fist bumps. It is a beautiful scene and Alex eats it up, as well he should considering the rigors of testing, poking, hoisting, and scanning that he must endure.
On arrival to the hospital, we roll to Building A1 where Alex visits with one of his favorite Children’s employees, Herb in lab testing. Herb has admitted Alex for the past twelve years or so, and has become a friend on sight. He kindly asks Alex how he’s doing, if he enjoyed Thanksgiving, and if he’s excited for the new Star Wars movie. He gives Alex a fist bump and wishes him well for his bloodwork. There, Alex typically endures countless pokes for blood because his veins lie hidden deep in his arm and are prone to collapse. But, today we had success! One stick was all it took as Alex watched intently and complimented the nurse for a job well done. Smiles all around.
After a quick stop back with Herb, we were off to Pulmonary in Building C4. There, Alex strikes up conversation with Nancy, the pulmonary technician who rigorously cheers him on throughout the strenuous PFT testing. Alex works hard to cough, push, or pull air at the best of his ability. He beams with pride for his strong scores and apologizes repeatedly if his numbers should slip. Nancy is wonderful, however, and reassures Alex not to worry and that all she expects is his best. She then tells Alex she enjoyed meeting him and that he brightened her day with his conversation.
We then head to Radiology in Building B1 to assess Alex’s scoliosis, bone age, and spinal compression fractures. As we sit in the waiting room, Alex befriends a 30-something woman who suffers from degenerative muscular dystrophy. By the time Radiology calls us back, the woman is full of smiles for meeting Alex and joyfully wishes him well. In the x-ray room, Children’s technicians use a sling which is two sizes too big and makes Alex look like a burrito as they hoist him onto the table. We share a laugh, which makes the pain of lying on a hard table bearable for a kid with spinal compression fractures. After snapping many pictures of his spine, the technicians gingerly hoist Alex back into his wheelchair, and sincerely wish us well for the rest of our day.
We then trek to Building T1 for Dexa scans where they, again, hoist and position Alex on a table to evaluate his osteoporosis and bone densities. After they stretch and pivot Alex all about for the scans, they hoist him back into his wheelchair, but not before he compliments a technician that she is pretty. The comment genuinely flatters the young woman and she becomes putty in his hands.
Alex and I then go to lunch in the cafeteria, where Alex not surprisingly befriends a Pepsi restocking vendor, a Gold Star Chili server, and a cafeteria cashier. Also, before we leave, he tells an Amish man he likes his long beard, which prompts the accompanying Amish woman to blush for Alex’s boldness. I simply shake my head and smile at how a day of glimpsing the monster has steadily turned into a day of smiles and laughter, even for the Amish.
We head to Cardiology in Building C4 for an EKG, where Alex talks with Bill, the cardiology admitting professional, about movies and video games, and then flirts with Heather, the young cardiology technician running the EKG. Alex stops back one more time with Bill, before we journey to Building A6 for the day’s main event, Alex’s cardio MRI.
There, cardiology nurses Christy and Emily help Alex to endure a record two pokes in his hand to set his IV tube (typically takes Alex four to five sticks before success). Through it all, Alex holds a smile and toughs it out while they prepare him for the ninety-minute cardio MRI.
Technicians yet again hoist and then position Alex flat onto the MRI table. They strap him down for entry into the narrow, claustrophobia-inducing, tube. Alex surrenders fully and turns to me for good luck because he knows he must stay still throughout the MRI. He wiggles his hand free and opens it for me to grab in encouragement. We hold eye contact, smile, and share nods that everything will be fine. He smiles bravely and then releases his grip as he slides into the machine.
Despite his discomfort from a sore back, Alex knows he must lie still in the MRI for nearly ninety minutes to have good results. He watches a movie to pass the time (he chose Megamind), but what he really thinks about is how much longer he must endure the flat table and the loud, resounding, pangs of the MRI.
When done around 4PM, they pull Alex from the MRI tunnel, remove his IV tubes, and hoist him into his wheelchair for the final time at the hospital. We share a smile of accomplishment and relief the day is over, collect our belongings, and head back to the car. Before we do, we return to Building A1 to visit with Herb, but he is gone for the day. So Alex talks with Herb’s shift replacement…of course.
On the ride home, the day catches up and Alex succumbs to exhaustion (see below).
At home, I hoist a sleepy Alex into the comfort of his own bed. He sighs deeply and says,
“I did well today, didn’t I, Dad? Aren’t you proud of me?”
“You were awesome today, Bud. Way to go! And, yes! Very proud!”
Alex smiles, yawns profusely, and then settles into sleep as I head downstairs to capture my thoughts of this long and exhausting day.
To be honest, I feared today. I worried about declining PFT values and Alex’s discomfort from being hoisted repeatedly and lying prone on hard tables. But, thanks to the wonderful staff at Children’s, the day couldn’t have turned out any better.
Note: The Children’s visit continues Thursday, when we meet with doctors from Pulmonary, Cardiology, Neurology, and Endocrinology, and with several professionals from Nutrition, Social Services, Physical Therapy, and Rehabilitation, to discuss today’s results, Alex’s overall health, and the path forward. Deep breath. For now, I'll let him sleep.