Ostomy Independence

“She’s a very sick young lady, but we’re cautiously optimistic,” was a phrase reiterated often by the intensive care doctors as Nava’s life hung by a thread. Each breath emitted by the ventilator signified life, while each strange beep was the scare of death. She lay in a drug-induced, paralyzed coma hooked up to every possible life-saving machinery. All this from complications of ulcerative colitis.

Survival
Nava became the statistic of a secondary infection brought on by strong medications that clashed with a severely compromised immune system. Nocardia was the name – a rare form of pneumonia seen mostly in patients with AIDS and even then very seldom. Acute respiratory distress syndrome developed and her lungs became greatly impaired.

Between the stiffness of her lungs and the pressure of the ventilator in pumping oxygen, her lungs became like tires with constant blow-outs. As new holes popped up, chest tubes were inserted to drain the fluid, until at one point she had eight tubes at once. For two and a half months, she was kept alive with every possible technological device along with tubes coming out of every opening – nose, throat, veins, bladder and chest.

Recovery
Three months after entering the ICU, Nava left for a rehabilitation hospital to begin the next phase. Medically stabilized, though obviously very fragile, she was out of the acute, life-threatening stage and entering into rebuilding. She had a long climb upward, literally fighting against gravity and air pressure, vomiting her way to standing, as a mountaineer gets altitude sickness. Nava bravely and consistently struggled to relearn and reclaim all her abilities and functions. From breathing on her own to swallowing to eating to lifting her finger, her hand, her legs-it was grueling work to build a body back up, but each body part re-acquired its use. Nine months later, Nava walked (with the help of a walker) out of the rehabilitation hospital.

Ostomy Independence
Nava had pulled through a year-long medical crisis. We had a few months to catch our breath and then trouble began, a colitis flare-up with bleeding. This time surgery was the route of choice. No playing with medicines anymore. Out with the colon. But that meant an ostomy; and the fear around the ostomy was whether Nava would be able to handle it herself. For Nava is a young woman with developmental disabilities. She had progressed so well in her twenty years in becoming independent that the idea of her becoming dependent upon someone for her bodily care was terrifying to me. She’d be tied to someone forever. What kind of quality of life would she have? She had survived, recovered and gotten her life back. Now this. Now what?

Nava had a colectomy and protectomy and a permanent ileostomy, done in two separate surgeries, three months apart. Then the work to learn how to handle a basically new bodily function began. I tried very hard not to allow myself to go to the “it’s not fair” thought pattern as I watched my daughter struggle with her weak fine-motor skills, as she repeatedly practiced manipulating her ostomy supplies.

She could hardly pull a brush through her hair; how would she empty and change a wafer/pouch? Over many months, with the help of wonderful ostomy nurses, who with patience and an abundance of kindness, taught her the intricacies of ostomy care, Nava became adept at doing it herself. And Nava became my teacher, who, with her positive attitude and desire to get on with her life, taught me acceptance.

She has her life back as before, able to do and engage in everything. Her overt remnant is a tracheotomy indentation in her throat. And as Catherine Zeta-Jones said of her “trach” mark when asked why she doesn’t have plastic surgery to close it up, she wears it as her “badge of courage.” So too does Nava. Her hidden key to life is her bag, which has given her a healthy life. Her persistence, courage, and “positiveness” have given her a remarkable quality of life.

Having witnessed my daughter’s miracles of survival, full rehabilitation and ostomy independence, I feel as though I too have a second lease on life.

The Phoenix

March 2010