Eight weeks can seem like an eternity. It can also be over before you know it. No matter your perspective, eight weeks is the rough equivalent of sixty days and sixty nights. It’s two long months looming before you, or two quick months already distant in the rearview mirror. It equates to 1,500 hours or 90,000 minutes, give or take. Regardless, anyway you slice it, eight weeks is eight weeks. And, for boys with Duchenne, eight weeks can be downright exhausting no matter how it adds up.
For us, the fun began at an OSU football game in early October. Sitting high up in Ohio Stadium, Alex and I watched the Buckeyes beat the Indiana Hoosiers (http://www.davidlclick.com/blog/a-view-from-section-33b), oblivious to the eight weeks that would soon be our future. During the game, we cheered as the Buckeyes padded their playoff resume. We visited with old and new friends. We braved the constant, steady, fall wind as it whipped against our faces in the last row of the stadium. After the game, we stayed in our seats before leaving (note: wheelchairs and crowds do not mix well), and then made our way through lingering tailgaters to our parked van. As we drove home later that night, we stopped at a Fazoli’s restaurant in Grove City to warm our bellies and shake off our chill. I was sniffling. Alex was sniffling. The pasta was nice and warm.
That’s when I heard the first cough.
At first, I thought Alex swallowed something wrong and needed to wash it down with his blue Italian Ice. But, another cough soon followed, and then another, as he tried to clear his throat and apologized for his disruption to our conversation. A runny nose soon joined the party, and he asked for a tissue. I held a napkin to his nose as he blew the first of many blows that night. It was clear that a cold was in the making. Great.
No big deal, I thought. He’s fought them off before. Give him a week or two, and he’ll be as good as new, I thought.
That was then. This is now.
That was then was during his younger Duchenne years. Doctors had always warned us of weakened immunity with Duchenne. But, Alex always fought off colds with relative, and dare I say normal, ease. He seemed remarkably healthy during his early years, even staying cold-free over the past two. I remember thinking, hey, this depressed immunity thing may be overrated.
Not so fast, Dad.
As many Duchenne parents can attest, colds and Duchenne become friendly allies and often welcome one another with open arms. As if systematically destroying every muscle in the body is not harsh enough, Duchenne happily allows a simple, pesky, cold to set up camp and stay for as long it wants. In exchange, the common cold exacerbates Duchenne and reminds you of Duchenne’s merciless power and control over your son. Arms too tired to lift even a little, become dead weights during a cold. Lungs too tired to breathe, leave our sons exhausted for much of the day and night. Coughs too weak to yield phlegm, allow mucus to fester, often leading to infection or pneumonia. Throw in constant hacking, endless nasal, sinus, and chest congestion, and restless nights…for everyone, and the common cold can be miserable.
Through it all, we help Alex as best we can, though his strength dictates the severity and duration. We help him blow his nose constantly. We keep him well-hydrated to loosen his mucus. We use a cough assist machine to make his coughs more productive and help suction his lungs. We keep his spirits up when he is too exhausted to leave his bedroom. We strap on his BiPAP to help him breathe. We encourage him that his cold will be over soon.
Over eight weeks, however, that reassurance loses its luster.
Because of his cold, Alex is too tired to attend school. Instead, he has resumed home instruction where a teacher comes to the house for one-on-one learning. It's not ideal, especially for a social kid like Alex. But, it works and keeps him up-to-date as best possible. Besides, who wants to help a kid blow his nose all day, hear him cough constantly in class, and wipe mucus and phlegm off his lips? I realize personal aides are available, but I would think they have limits. Besides, why likely spread his cold to others?
It's not that his cold restricts him from everyday life. He still enjoys getting out of the house every now and then. Three weeks into the cold, Alex forced himself to enjoy Halloween trick-or-treating. Thankfully, it was a dry and wonderfully warm night and Alex enjoyed talking with every neighbor he could find and fill his pillow case with shovels of candy. However, the night flat-out drained him and he stayed in bed for nearly a week afterward.
Four weeks into the cold, nothing would stop Alex from attending his buddy Zach’s 17th birthday party. He enjoyed pizza, cake, and late-teen hoots and hollers with eight young men. He smiled and watched from his wheelchair as his friends jockeyed for position around a TV, playing video games late into the night. Ever the night owl, Alex called me around midnight (which is about two hours earlier then when he typically calls) to come home. The cold had taken its toll on him that night and he had as much as he could handle. The party wiped him out for yet another a week in bed.
In week seven, Alex endured two long and grueling days at Cincinnati Children’s Hospital during his annual Duchenne clinic visit. There, doctors, nurses, and technicians listened to his breathing, administered a Pulmonary Function Test, and took x-rays of his lungs. Thank goodness, his lungs were clear and he did not have pneumonia. But, his body was clearly exhausted. His PFT testing results were abysmal and concerned the practicing pulmonologist (though she agreed his continuing battle strongly affected his PFT results). She opened our eyes to his struggle by showing us how Alex’s pulmonary results were nearly half of where they were last year…when they then showed a 30% lung function…you do the math. After rotating the computer monitor for Alex and I to see, she proceeded to show us x-rays of his lungs that reinforced the seriousness of a common cold and Duchenne.
“See those black areas on the x-ray?”
We did.
“Those are his lungs,” she pointed.
They looked small to me. But, I am not a doctor.
She confirmed my thinking as she counted the number of ribs crossing the lungs.
“Normally, our lungs extend beneath about eight ribs from top to bottom.”
Uh-oh. This doesn’t look good, I thought to myself.
“As you can see for Alex, his lungs are crossed by three-and-a-half ribs.”
She made a small circle with her thumbs and index fingers and held it to her chest, for example.
“Duchenne has affected his lung capacity to about 25% of what you and I use….and that’s before having a cold for (then) seven weeks.”
She looked to Alex and shook her head in admiration. He offered a polite smile in return.
“It’s no wonder you are tired!”
It’s no wonder indeed! This kid has been dealing with breathing difficulties for eight weeks! And doing so with small, weakened, congested lungs! Talk about a fighter!
Later, his neurologists, Drs. Wong and Rybalsky, evaluated Alex and his x-rays, and charted a new course. Though not a cure-all, they prescribed an antibiotic to help him fight off any possible nasal or chest infection. We must continue to use his cough assist to suction any mucus out of his chest, nose, and throat. He must drink as much water as he can to stay hydrated. We must give him daily Mucinex to loosen his mucus. No matter how irritating his coughing may be, we must NOT give him any cough suppressant because doing so can worsen his ability to expel the mucus. We must no longer give him doses of Nyquil to help him sleep for the same reason (major guilt with that one). Hopefully, this path will lead get us back to normality.
So, here we are eight weeks and counting. The Buckeyes game is long in the past. The Christmas holidays are around the corner. A New Year is fast approaching. It is safe to say, the LAST thing Alex should be dealing with (aside from Duchenne) is a continuing cold.
As parents, we hope the antibiotics work and Alex’s mucus soon leaves. Although we are not out of the woods, we hope he has dodged the bullet with pneumonia, and can rid himself of his stubborn cough. We hope his nose dries up and he can breathe easier. We hope our dogs enjoyed their run of eating the endless supply of used tissues.
Alex, not surprisingly, battles onward. His smile never ceases. His bursts of laughter never stop (though are occasionally interrupted by a cough or sniffle). He never truly complains as most of us surely would while suffering such a lengthy cold.
Alex just rolls with the punches and lives his life the best he can.
As we all should.
For us, the fun began at an OSU football game in early October. Sitting high up in Ohio Stadium, Alex and I watched the Buckeyes beat the Indiana Hoosiers (http://www.davidlclick.com/blog/a-view-from-section-33b), oblivious to the eight weeks that would soon be our future. During the game, we cheered as the Buckeyes padded their playoff resume. We visited with old and new friends. We braved the constant, steady, fall wind as it whipped against our faces in the last row of the stadium. After the game, we stayed in our seats before leaving (note: wheelchairs and crowds do not mix well), and then made our way through lingering tailgaters to our parked van. As we drove home later that night, we stopped at a Fazoli’s restaurant in Grove City to warm our bellies and shake off our chill. I was sniffling. Alex was sniffling. The pasta was nice and warm.
That’s when I heard the first cough.
At first, I thought Alex swallowed something wrong and needed to wash it down with his blue Italian Ice. But, another cough soon followed, and then another, as he tried to clear his throat and apologized for his disruption to our conversation. A runny nose soon joined the party, and he asked for a tissue. I held a napkin to his nose as he blew the first of many blows that night. It was clear that a cold was in the making. Great.
No big deal, I thought. He’s fought them off before. Give him a week or two, and he’ll be as good as new, I thought.
That was then. This is now.
That was then was during his younger Duchenne years. Doctors had always warned us of weakened immunity with Duchenne. But, Alex always fought off colds with relative, and dare I say normal, ease. He seemed remarkably healthy during his early years, even staying cold-free over the past two. I remember thinking, hey, this depressed immunity thing may be overrated.
Not so fast, Dad.
As many Duchenne parents can attest, colds and Duchenne become friendly allies and often welcome one another with open arms. As if systematically destroying every muscle in the body is not harsh enough, Duchenne happily allows a simple, pesky, cold to set up camp and stay for as long it wants. In exchange, the common cold exacerbates Duchenne and reminds you of Duchenne’s merciless power and control over your son. Arms too tired to lift even a little, become dead weights during a cold. Lungs too tired to breathe, leave our sons exhausted for much of the day and night. Coughs too weak to yield phlegm, allow mucus to fester, often leading to infection or pneumonia. Throw in constant hacking, endless nasal, sinus, and chest congestion, and restless nights…for everyone, and the common cold can be miserable.
Through it all, we help Alex as best we can, though his strength dictates the severity and duration. We help him blow his nose constantly. We keep him well-hydrated to loosen his mucus. We use a cough assist machine to make his coughs more productive and help suction his lungs. We keep his spirits up when he is too exhausted to leave his bedroom. We strap on his BiPAP to help him breathe. We encourage him that his cold will be over soon.
Over eight weeks, however, that reassurance loses its luster.
Because of his cold, Alex is too tired to attend school. Instead, he has resumed home instruction where a teacher comes to the house for one-on-one learning. It's not ideal, especially for a social kid like Alex. But, it works and keeps him up-to-date as best possible. Besides, who wants to help a kid blow his nose all day, hear him cough constantly in class, and wipe mucus and phlegm off his lips? I realize personal aides are available, but I would think they have limits. Besides, why likely spread his cold to others?
It's not that his cold restricts him from everyday life. He still enjoys getting out of the house every now and then. Three weeks into the cold, Alex forced himself to enjoy Halloween trick-or-treating. Thankfully, it was a dry and wonderfully warm night and Alex enjoyed talking with every neighbor he could find and fill his pillow case with shovels of candy. However, the night flat-out drained him and he stayed in bed for nearly a week afterward.
Four weeks into the cold, nothing would stop Alex from attending his buddy Zach’s 17th birthday party. He enjoyed pizza, cake, and late-teen hoots and hollers with eight young men. He smiled and watched from his wheelchair as his friends jockeyed for position around a TV, playing video games late into the night. Ever the night owl, Alex called me around midnight (which is about two hours earlier then when he typically calls) to come home. The cold had taken its toll on him that night and he had as much as he could handle. The party wiped him out for yet another a week in bed.
In week seven, Alex endured two long and grueling days at Cincinnati Children’s Hospital during his annual Duchenne clinic visit. There, doctors, nurses, and technicians listened to his breathing, administered a Pulmonary Function Test, and took x-rays of his lungs. Thank goodness, his lungs were clear and he did not have pneumonia. But, his body was clearly exhausted. His PFT testing results were abysmal and concerned the practicing pulmonologist (though she agreed his continuing battle strongly affected his PFT results). She opened our eyes to his struggle by showing us how Alex’s pulmonary results were nearly half of where they were last year…when they then showed a 30% lung function…you do the math. After rotating the computer monitor for Alex and I to see, she proceeded to show us x-rays of his lungs that reinforced the seriousness of a common cold and Duchenne.
“See those black areas on the x-ray?”
We did.
“Those are his lungs,” she pointed.
They looked small to me. But, I am not a doctor.
She confirmed my thinking as she counted the number of ribs crossing the lungs.
“Normally, our lungs extend beneath about eight ribs from top to bottom.”
Uh-oh. This doesn’t look good, I thought to myself.
“As you can see for Alex, his lungs are crossed by three-and-a-half ribs.”
She made a small circle with her thumbs and index fingers and held it to her chest, for example.
“Duchenne has affected his lung capacity to about 25% of what you and I use….and that’s before having a cold for (then) seven weeks.”
She looked to Alex and shook her head in admiration. He offered a polite smile in return.
“It’s no wonder you are tired!”
It’s no wonder indeed! This kid has been dealing with breathing difficulties for eight weeks! And doing so with small, weakened, congested lungs! Talk about a fighter!
Later, his neurologists, Drs. Wong and Rybalsky, evaluated Alex and his x-rays, and charted a new course. Though not a cure-all, they prescribed an antibiotic to help him fight off any possible nasal or chest infection. We must continue to use his cough assist to suction any mucus out of his chest, nose, and throat. He must drink as much water as he can to stay hydrated. We must give him daily Mucinex to loosen his mucus. No matter how irritating his coughing may be, we must NOT give him any cough suppressant because doing so can worsen his ability to expel the mucus. We must no longer give him doses of Nyquil to help him sleep for the same reason (major guilt with that one). Hopefully, this path will lead get us back to normality.
So, here we are eight weeks and counting. The Buckeyes game is long in the past. The Christmas holidays are around the corner. A New Year is fast approaching. It is safe to say, the LAST thing Alex should be dealing with (aside from Duchenne) is a continuing cold.
As parents, we hope the antibiotics work and Alex’s mucus soon leaves. Although we are not out of the woods, we hope he has dodged the bullet with pneumonia, and can rid himself of his stubborn cough. We hope his nose dries up and he can breathe easier. We hope our dogs enjoyed their run of eating the endless supply of used tissues.
Alex, not surprisingly, battles onward. His smile never ceases. His bursts of laughter never stop (though are occasionally interrupted by a cough or sniffle). He never truly complains as most of us surely would while suffering such a lengthy cold.
Alex just rolls with the punches and lives his life the best he can.
As we all should.
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