“I’ve got ONE for big boy Jadon two, TWO for big boy Jadon three, THREE for big boy Jadon four, FOUR for big boy Jadon five, Five for big boy Jadon, DONE, done, done, done with three sets. Good job buddy,” I lean down and kiss my 18 month old son on the cheek. Placing the cough assist mask and hose across my left arm as the machine stills sounds off with its whhhooof, whhhooof, whhhooof, I reach across my body and hit the switch for the suction machine. Grabbing the suction catheter I move it to his mouth and suck up the extract running down his cheek first and then move on to his mouth. “Open up fella,” with a disgusted look on his face his tight mouth loosens so I can suction out the back of his throat.
We refer to the cough assist as “The Big Nasty” and today it is apparent why. The machine simulates a cough by forcing 40 pounds of pressure into Jadon’s little lungs and then sucking 40 pounds of pressure back out. Jadon is unable to cough on his own and this machine helps keep his lungs clear of mucus build up.
Some days we flow through the routine of the day, but today is not one of those days. I feel it as well, but Jadon (aka “The BUG”)makes it obvious that he doesn’t feel like doing any coughs today. He has been healthy so we are doing our routine 4 sets of 5 coughs, tap taps, and then another round of 4 sets of 5. Knowing we can’t even skip this last set, I replace the suction catheter on the machine and grab the cough assist mask.
I look into his stone blue eyes and say “Only one more set buddy.” He closes his eyes slowly with obvious exhaustion. “Come on Buddy, just one more.” I pick up my enthusiasm in hopes of picking him up a little. As I place the mask and the appropriate pressure on his face I start to sing.
“Here we go, say here, here, here we go,
we gotta get get get to the Jadon show.
We gotta hear him plaaaaaay ‘little BUG’
Say little BUG, little BUG, how are you?
Little Bug, little BUG how do you do?
Ahhhhhh little BUG, little BUG I love you,
I love you, I love you, yes I do.”
After suctioning I shut off both machines and place the hoses in their appropriate places. I give him another kiss and remove my left hand from under his head. Positioning his head on the gray bean bag pillow his grandma made for him, I can see he is not breathing. I turn to my right to activate his breathing machine, an Avaps Bi-pap, which takes more than a second to kick in. I already know before the alarm sounds, his oxygen level is dropping
The pulse-ox machine which measures his heart rate and oxygen saturation tells me that his heart rate is climbing back up but his oxygen is dropping. Anything lower than 90% oxygen saturation is reason for concern. I grab the bi-pap mask and position it on his face. Jadon is unable to form words but his eyes tell me that he is relieved to have some “good breathes”. I hold the mask in place and watch his oxygen percentage continue to drop. We got to it quickly so hopefully the number doesn’t get crazy. 85, 83, 81, 78…..76…76…78, 83, 86, 92, 93, 95, 96. I give thanks that it wasn’t too bad. Jadon has seen some very low numbers which apparently isn’t completely typical for SMA kiddos but this time he jumped right back up.
“96 isn’t bad, how about a seven?” I say and he instantly jumps up to 97%. “How about an eight? Can I get an eight?,” The red number on the pulse-ox switches from 97 to 98. “That’s what I’m talking about buddy,” I lean down and kiss his cheek while keeping the mask in place.
I hold the mask in place and glance out the window where a snowy day has engulfed theKansas Cityarea. I can’t help but think about all of the complaining going on this morning at my old job. Complaining about how bad the roads were, how the shop should have closed for the day. Someone will unjustly say the company just doesn’t care about their safety. There will be several of the guys disgusted because Joe didn’t make it in. Joe never makes it in when it snows. Someone will chime in that Bob stayed home just because his kids had the day off. Bob will probably spend the day building snowmen with his kids. The shop guys will say that is wrong, I say, good job Bob.
Their hassles of life could use some perspective. Mine did, but not anymore. I see how precious life is as it lies right in front of me. Life has been stripped down to its basic essentials, one breath, one laugh, one smile, one kiss, and one “I Love You” at a time. I tell our story as often as people will listen. I do this not for pity or charity but hopefully to help them with their perspective. The guys at work are very close to our story but I am certain we are not on their mind as they complain about the hassle of moving through the snow.
Although our little warrior can only move his fingers and his feet he still rises each day with a smile to battle the monster known as SMA (Spinal Muscular Atrophy). Jadon has type 1 and at a year and half old he has already beaten so many odds with this terminal disease. We have known about the monster in our lives since Jadon’s two month birthday. We have learned more about SMA than we would have chosen. As it turns out, for us, the course was a requirement not an elective. What has been surprising is all of the other courses that we are taking at the same time. Those courses consist of lessons in: God, Life, Love, Charity, Compassion, Understanding, and Asking for help.
I will take the bi-pap mask off of Jadon shortly and we will continue our day. We will have six hours together with no equipment and two sessions of bipap totaling 5 hours. We will read books, walk around the house, and sit at the window and watch the people sled down the hill across the street. We might hide all of his stuffed animals and then from his stroller, roll around the house and find them. I will hold his hand while he watches Phineas and Ferb and maybe, just maybe his stuffed platypus, Perry, will jump out of nowhere and land on his cart. I will kiss him at least 173 times and tell him “I love you” close to 212 times, just because I want him to know.
Tonight when Kristin puts the bipap mask on for the last time today and we kiss him good night (a 20 minute process), I will thank God for another great day. I will know that we completely enjoyed the day and evening together. I can look my wife in the eye and tell her that I love her and know that we are truly living our lives one day at a time. It seems to me that this is truly the only way to live. Especially since one just never knows, I could die tomorrow.