CCN Series Blog

Purple Hearts - Broken Brains

The Families

Troops and Vets

I know Traumatic Brain Injury - only too well. My daughter sustained a severe TBI in August 2004. Nothing - NOTHING changes a person or their entire family more! Her life and ours will never be the same.

- Carolyn Harrison, Oakland, NJ

When troops suffer severe brain injuries, the lives of their families are turned upside down. They typically spend months away from home at hospitals and rehab centers, often give up jobs and face financial hardship. They're drawn into an emotional roller coaster that few of us have ever contemplated.

The first hurdle is survival. Their son has survived. Her husband is alive. Their daughter has made it to Germany, supported by a ventilator, but she's living.

Injured troops are returned to the U.S. as soon as possible, usually within a few days. What follows is often a succession of medical crises.

There can be neurological episodes such as accumulation of fluid in the brain (hydrocephalus) and spasming of blood vessels causing reduction in oxygen reaching the brain. There may be high fevers or fluctuating blood pressure and pulse rates. Pneumonia is not uncommon.

And then there's the waiting, the interminable waiting - waiting, watching, hoping for responses.

Measuring progress in the minutest of ways. He opened his eyes part way today. He moved his toe. He raised his index finger. She squeezed my hand. He blinked for "yes." She's started to breathe on her own.

Communicating with friends via internet journals, some families display their newly acquired fluency in the medical terminology of brain injury. They explain intra-cranial pressure (ICP) and talk about shunts to relieve accumulating fluid in the brain.

Some families report signs of the complex phenomenon called dysautonomia. This syndrome results from dysfunction of the autonomic nervous system causing the patient to have episodes that include increased heart rate, blood pressure and respiratory rate, muscle spasms and profuse sweating. These episodes result in great expenditures of energy that leave the patient exhausted.

Families report about oxygen saturation, vital signs, tracheostomy tubes, spiking temps and seizures. They describe interventions like tracheal suctioning and catheter changing as part of the daily routines. They write about frequently recurring infections and rejoice in “infection free” days.

They explain tracking - the patient following a person or object with his eyes. They look for signs of their loved one's personality breaking through the barrier of the injury which has so drastically changed his ability to interact.

They watch for signs to indicate if she responds to stimulation or can "follow commands." This kind of vigil goes on for days, weeks or even months. For some, this stage may continue indefinitely.

One of our soldiers is now more than six months post injury. With the assistance of therapists, he's able to stand in a standing frame for 30-45 minutes a day. And, if he's having a good day, he can hold his head up without assistance. He's not yet speaking and is still getting all his nutrition through a feeding tube. He remains dependent for all his basic care.

Yet his family remains hopeful, and like others who’ve written journals, share their encouragement at the “baby steps” on the road to improvement. All the while managing the logistics of staying near the hospital in hotels and taking turns flying home.

Another young soldier leaves the ICU after 3 months, still on a ventilator, but beginning the weaning process. His parents note that just the effort of breathing on his own is exhausting and leaves him little energy for other therapies. Yet being able to take him outside without the ventilator is an important step in their journey.

Family members learn how to do much of the needed care as well as monitor for changes to report to the physicians and nurses. For example, they may learn how to perform passive range of motion to help maintain tone, circulation and proper positioning of extremities. And if their patient is unusually restless or warm or in apparent pain or discomfort, they alert the staff.

They become advocates for their patient with the medical staff when they feel not enough is being done, as well as with the DOD and VA benefits system. And some also navigate the legal system to obtain guardianship and power of attorney.

The content of the family journals seems to be apolitical. As with any crisis, the families seem focused on the care and well-being of their injured loved one. The journals also show gratitude for the support from extended family and friends and thankfulness that their son, daughter or husband is still alive and with them, despite the severity of the injuries. There are ongoing requests for prayer and references to faith helping them through the crises.

One family has shared their story more publically. Here are some excerpts from a speech the father of an injured soldier gave to a Washington DC Symposium and rally sponsored by the Christopher Reeve Paralysis Act Foundation:

Good afternoon. My name is Joseph Briseno, and I am here on behalf of my son, Jay Briseno. Three years ago, Jay was a 20-year-old Army Reservist who was called up to active duty. He was happy to serve his country in the Iraq War, and worked, along with the rest of his Civil Affairs unit, Baghdad. His job entailed to rebuild Iraq after the war, delivering food, and goods to the Iraqi citizens. It wasn't considered a dangerous position. Until late June of 2003, when Jay's life was changed by a single bullet to the back of his neck. An Iraqi bystander shot my son, and that single bullet severed Jay's spinal cord. As a result, Jay suffered two cardiac arrests, which cut off his oxygen supply for several minutes, and because of this, he sustained an unknown amount of anoxic brain injury. --snip--

Jay still has a long way to go to make a full recovery, but he has also progressed more than doctors ever thought possible since he was injured. Jay remains a C-3 quadriplegic who is paralyzed from his chin down. He cannot eat, move, speak, or breathe on his own. Although Jay is conscious, his ability to communicate is severely limited - he can only blink, smile or grimace in response to voices and other noises. Since Jay's return home in December of 2003, Jay's mother, two sisters, and I have transformed our basement into an intensive care unit for Jay. This is where we have spent our days, nights, holidays, birthdays for the past three years, watching over Jay's breathing, vital signs, and the multitude of tubes, wires and monitors that labor to keep our son alive.

Jay requires 24-hour-a-day nursing care, and his mother, sisters, and I sleep, eat, and live at his bedside, caring for him around the clock. He must be hooked up to a machine that helps us lift and turn him 12 times a day, every day, so that he won't have bedsores. A slight shift in the temperature in the house, something as small as a bug or some dust, or a loose wire on his tubing, are more than dangerous for Jay - they hold the power of life or death. Neither my wife, nor I, has slept for more than 3 hours at a time in the past 3 years.

My daughters have given up their outside activities, and like my wife and me, they devote themselves to spending hours and days and months on end at Jay's bedside, talking with him, reading to him, or just being near him. We have hired nurses to help us care for our son, but with the widespread nursing shortage in our country, it is not unusual that we must go without a nurse for Jay - caring for him by ourselves. At times, I have quit my job to care for Jay full-time, my wife has quit her job to care for Jay other times, and there have been long periods of time during which neither of us has been able to work, because Jay needed us. Retirement is no longer an option at any age. Family vacations are out of the question. Even a trip to the grocery store for one of us requires a careful coordination of my family's schedules.

And we have not a single regret. We are only thankful, that our Jay is with us, that he is alive and living and with us, in our home, every moment of every day. And little by little, step by step, Jay has regained abilities we were told would be “impossible,” given the extent of his injuries. Jay does not believe “impossible” - and neither do we.

More. .

PBS Newshour documented the Brisneros’ story in two segments. The video report provides insights that words alone can’t capture. The first segment, was done in April 2005. How Families are Caring for the War Wounded begins with this exchange:

JOSEPH BRISENO: Open, OK? Thank you. I love you Jay, I love you.

SUSAN DENTZER: This is how the day begins for Jay Briseno, with his father, Joe, lovingly brushing his grown son's teeth.

JOSEPH BRISENO: OK, that is done. OK, can I wash your face now, you can go back to sleep?

SUSAN DENTZER: These daily care giving rituals have gone on for nearly two years, ever since Jay Briseno was wounded while serving in Iraq.

There are both video and audio links to the segment on the Newshour website.

The Newshour followed up in December of 2005 with another visit to the family. As with the April interview, video, audio, transcript and extended interviews are posted on the site: Revisiting the Family of a Wounded Soldier. Although there is some progress in Jay’s condition noted, the burden of family caregiving remains incredibly heavy, with little indication of relief in the foreseeable future.

The extent of the need for family caregiving is relatively new in our society, but growing. The aging poplulation is a contributor, but severe injuries to younger people, like those suffered by our troops in Iraq, are another factor. In the past, many would simply not have survived. But advances in medicine are keeping them alive.

While the Brisneros’ situation is one of the most extreme, many other troops have been so severely injured that they’ll need some level of family care in order to stay at home rather than in nursing homes. The families as well as the troops need the support of the country. In our next installment, we’ll take a look at some of the help that’s being provided by communities and organizations.