I am awakened at 5am by the shrieking sound of the pulse-oximeter alarm blasting through the baby monitor located inches from my ever vigilant ear. Jack’s oxygen saturations have dropped below 90. I force myself out of bed and head downstairs to Jack’s room. I flip on the suction machine, thread the catheter through his tracheostomy tube and suction out the mucous that has accumulated in his airway. Within seconds, his O2 saturations rise to 96 and a smile comes across his beautiful face. “Ahhhhh . . . I can breathe again” is what I imagine he would say, if only he could speak . . .
My son, Jack, is 6 years old and has been diagnosed with congenital muscular dystrophy. Jack requires the assistance of a ventilator to help him breathe, 24 hours a day, 7 days a week. Jack also requires continuous suctioning to keep his airway clear of the mucous he is too weak to cough up. Jack’s weakness is so severe that he can move little more than his hands. He cannot independently sit, stand, or change his position. Jack does not eat by mouth, he is fed via a gastrostomy tube surgically inserted in his stomach. Jack requires full assistance with every aspect of his life. Caring for Jack is a full-time job that involves a level of skill and knowledge that exceeds the experience of the typical parent. Jack can only be left in the care of his parents or a qualified nurse. As Jack’s mom, I had no choice but to learn how to use life supporting equipment and learn life saving procedures. It wasn’t in the too distant past that the level of care provided to Jack at home took place only in a hospital or skilled nursing facility and only by medical professionals.
. . . After having been abruptly awakened by the pulse-ox alarm, the next hour or more consists of virtually non-stop suctioning to clear Jack’s lungs and airway of secretions that have accumulated throughout the night. Once this is accomplished, Jack is fed his breakfast by pouring several cans of liquid nutrition directly into his stomach via his g-tube. After breakfast, Jack is transferred to his shower chair and given his daily shower. Jack weighs 61 pounds and I fear the day I can no longer lift him. After his shower is finished, Jack is given trach care and g-button care as the man-made holes in his neck and stomach must be cleaned daily and new dressings applied. Jack is then transferred to his wheelchair to begin his day.
. . . it’s noon and Jack is sitting in his wheelchair watching one of his favorite movies. I seize the moment and gather my stack of “Explanation of Benefits” from the insurance company and sit down to place yet another phone call to the insurance company. Rarely has a month gone by in the last six years where the insurance company hasn’t denied payment for a covered benefit or incorrectly paid a bill. After making my way through the maze of prompts to actually get to a live person, I then endure the usual condescending attitude of the insurance company representative who talks to me as if this is the first time I’ve ever called to dispute a claim. I am told it will take 30 days to reprocess the claim. Great . . . next call is to the medical supply company who has sent my account to collections – yet again – because the insurance company improperly processed a claim. Finally, there’s the follow-up letter that must be written to document who I spoke with and what was discussed.
In the distance, I hear the pulse-ox alarm again . . . Jack needs more suctioning. Since Jack’s been in his wheelchair for awhile, it’s time for a new position, so I move him from his chair to the couch. I change his diaper, suction some more, give my buddy a big hug and a kiss on the nose. He flashes me a smile that melts my heart every time. I have one more phone call to make – to my medical equipment company to place Jack’s monthly order of supplies. Despite ordering the same supplies every single month, in the six years Jack has been home, not once has the order arrived without missing or incorrect supplies. The phone calls and letter writing are never ending and consume a significant amount of my time in any given week.
Having completed the administrative tasks for the day . . . it’s time to get back to meeting the needs and demands of Jack. Throughout the day, Jack requires my attention for diaper changes, suctioning, postural drainage (gentle “pounding” on his back and chest to loosen secretions), range of motion exercises to keep his joints from locking into place (an inevitable consequence of his disease) and continuous re-positioning. Jack must be watched for signs of respiratory distress which can occur because of a blocked airway (mucous in the trach) or not enough support from his ventilator, both of which can cause “pockets” in his lungs to collapse. In an instant, Jack’s situation can become life threatening. Somewhere in between the physical therapy and the medical care, it’s important to find time to just play, hug and love my son. I often have to force myself to take off my medical/advocate hat and just be “Mom”.
Jack’s medical team consists of his pediatrician, pulmonologist, ophthalmologist, otolaryngologist, neurologist and orthopedist – all of whom Jack sees on a regular basis. In addition, there are the meetings every two months with the representatives from the state agencies that provide services to Jack. There’s the school district and the IEP meetings. I am constantly coordinating the ever changing schedules of the 7 different therapists who provide homebound services to Jack every week.
. . . I wearily sit down to catch a few moments of rest, when I hear . . . “Mom . . . Mom . . . MOM” coming from the other room. I pull myself up off the couch and go see what my three year old needs. You see, in addition to Jack, I have three other children who would like an occasional minute of my time and attention. Add to my schedule the demands of a typical three year old, as well as the homework, extra-curricular activities and the general emotional chaos that goes along with having two teenage daughters. As for my marriage . . . my husband and I have defied the odds because we are still married, despite the fact that we may get out together as a couple once or twice a year if we are lucky.
The stresses of caring for a medically fragile child are enormous. There is the emotional stress of knowing Jack’s very life is dependent on my ability to assess and respond to his needs in an instant. There is the reality that whether I go to work, get sleep or get out the house without feeling guilty is dependent on whether I have a competent nurse in my house. There is the guilt associated with not always being able to meet the needs of my other children, and of not being able to do the things a typical family does. There is the financial stress of missed days at work due to a nurse calling in sick, a doctor’s appointment or a hospital stay, as well as the co-pays, deductibles, and uncovered equipment and supplies. Finally, there is the shear exhaustion that comes from lack of sleep, constant vigilance and the never ending battles with insurance and equipment companies.
Despite everything, I would be remiss if I didn’t make it clear that above all else, what Jack needs most from the moment he opens his eyes in the morning to the moment he closes his eyes at night — is love. Loving Jack is effortless. It’s the keeping him healthy, comfortable and thriving that is overwhelming. Yet, without a doubt I am a better person, my other children are better people and the world is a better place because we have been blessed with the life of a little boy named Jack.