Medical Mom

It is morning and I pad quietly down the hall to peek in on B-man. I have to check on him not only for my own piece of mind but also because I love to watch him sleep. He seems so at peace when sleeping. Having had to get up before dawn since the age of 3 for school, I now let him sleep late. He is on his right side, facing me. This is unusual since his preferred position of sleep is curled sweetly into the fetal position, lying on his left side. Although he is calm at the moment, I realize the coughing will soon begin.

B-man has a chronic lung disorder known as atelectasis, which is basically, the incomplete expansion of a lung. Better known as a collapsed lung which left untreated, pneumonia develops. In B-man's case, he has had pneumonia numerous times, each one further weakening his already compromised system. Atelectasis can be caused by many factors. His is thought to stem from a combination of a partial obstruction due to mucous plugs and compression caused by his abnormal spinal curve and the placement of his gastrostomy button that allows him to receive supplemental calories. Over the years he has learned to lie on his affected side in order to keep from inducing a fit of coughing. Rarely, he will turn in his sleep. When he does, soon the accumulated secretions that have been pooling in the left lower lobe of his lung will, by force of gravity, begin to loosen and move about. This elicits the need to cough and so the attack begins.

One of the ways in which we attempt to keep the mucous buildup from sitting there and causing pneumonia is through a process known as chest physiotherapy or CPT for short. This is done by cupping a hand and literally pounding on the affected side of the chest. It is often painful for the person receiving it and very tiring for the person performing it. It is not extremely effective on chronic conditions due to the frequency and large amounts of time it is needed. I hated like crazy to do this task. My arms would tire after about 20 minutes and B-man became irritable and fussy due to being repeatedly pounded. I was sure I was going to eventually crack one of his ribs. Even doing this on a regular basis, we were unable to notice much response. Thankfully, there is a machine which is simply called, "The Vest" that has been developed and performs this therapy with ease and amazing results. It is unbelievably expensive and primarily used on patients with cystic fibrosis, however, we were offered the opportunity to try it out pending insurance approval. It was prescribed to be used twice a day for 20-40 minute each depending on need. After the first treatment, we were hooked and I vowed that even if insurance denied the exorbitant cost, I would find a way to purchase this incredible machine.

Immediately, B-man was able to cough up what looked like cups full of fluid from his lungs. The sheer volume of it was mind-boggling. Even as a nurse, I was impressed with the efficacy in which The Vest worked. To date we have successfully remained hospital free for 15 months. We occasionally have to give B-man a course of antibiotics when his cough becomes worse or fever develops but thankfully, he has remained at home due to the ability to "ramp up" his treatments. Meaning that I perform them on a longer and more frequent basis until he is well. I realize that this may not always be the case, but I take it one day at a time and am thankful for small triumphs.

On this morning, I soon hear the faint stirrings of B-man and the accompanying cough. I take one last sip of my coffee, look at the clock as I head toward his room and realize that "my" time for the day is over. I am now on B-man's clock. And so begins my day.