Holding On to Hope
Fred R. Conrad/The New York Times
IN TREATMENT Sgt. Daniel Tallouzi, wounded in Iraq by shrapnel to the brain, with his mother, Mary, at Kessler Institute for Rehabilitation in West Orange, N.J. More Photos >
ONE by one by one, the mothers have brought their brain-damaged soldier sons here to Kessler Institute for Rehabilitation, hoping against all odds for a miraculous awakening.
First came Denise Mettie of Selah, Wash., and her son, Specialist Evan Mettie, 24, who suffered such serious injuries from a suicide bomb in Iraq on Jan. 1, 2006, that he was initially reported ?killed in action.? Ms. Mettie was so critical of the rehabilitative care her son had received in military hospitals that she testified before a United States Senate committee in March 2007, and, as a result, the Department of Veterans Affairs agreed to pay for private care at Kessler, a rarity.
A week after they arrived in May 2007, Ms. Mettie e-mailed the mother of another severely brain-damaged soldier she had met when their sons were at a veterans hospital in Palo Alto, Calif. ?I wrote, ?You?ve got to get here,? ? Ms. Mettie recalled. ?It?s such an amazing change.?
Linda Cullum of Hackberry, Ariz., and her son Sgt. Blaine Douglas, 28 ? who served in Iraq but was injured in a motorcycle accident near a military base where he was stationed in Arizona ? arrived at Kessler in July. ?Denise trail-blazed the way for us,? Ms. Cullum said.
Mary Tallouzi?s son Sgt. Daniel Tallouzi, 23, was in a vegetative state at the veterans hospital in Richmond, Va., after sustaining a mortar wound to the head in Iraq. ?They told me he?d never neurologically improve, and asked what did I want to do,? said Ms. Tallouzi, who is from Albuquerque. Then she heard about the two mothers who had made it to Kessler. ?I said I?d like to go to Kessler. I was winging it. God?s in the best places, and this was supposed to be best.?
That was their beginning. ?The three of us stayed at the same hotel, and we saw each other every day, and we?d check on each other?s sons when someone?s not feeling well,? Ms. Tallouzi said. ?Everyone talks about the camaraderie of men as soldiers, but there?s definitely a camaraderie of moms.?
All three mothers gave up their jobs and left home, following their Army sons from hospital to hospital. Ms. Mettie, a bank service manager, was away for 22 months; Ms. Cullum, who helps run a small trucking business with her husband, Paul, for 13 months; and Ms. Tallouzi, an insurance claims processor, has been gone for 17 months. ?There?s a bond,? Ms. Cullum said. ?You just look them in the eyes and say, ?You know what I?m going through,? and they?ll nod their head, give you a couple words of comfort. Truthful comfort. Don?t give any false comfort to any of them. These moms, they don?t have any room for it. They want to know the truth. Good or bad, tell me what?s ahead of me, then I?ll deal with it.?
The truth is not good, or as Dr. Jonathan L. Fellus, head of Kessler?s 48-bed brain-injury unit, said, it?s ?different shades of bad.? Among the information the mothers have shared, said Ms. Tallouzi, is which antidepressants and anti-anxiety medications are best for getting through the 12-hour days they have spent at their sons? bedsides.
Five months after Sergeant Tallouzi arrived at Kessler and 17 months after a piece of shrapnel the size of a quarter pierced both hemispheres of his brain and left a large indentation at the base of his head, he remains in a vegetative state. Sergeant Douglas and Specialist Mettie have at times demonstrated behavior that would qualify them as minimally conscious, according to Dr. Fellus.
Like Sergeant Tallouzi, Sergeant Douglas and Specialist Mettie cannot speak and have no dependable form of communication ? they can?t control their blinking or their finger motions well enough. They get their nourishment through feeding tubes and are unable to do anything for themselves.
When it?s time for physical therapy, each is lifted into a wheelchair or onto a gurney by hospital aides. Sergeant Tallouzi is 6-foot-4 and 229 pounds, and his mother refers to this as the Lilliputians, moving Gulliver.
All three mothers have talked to their sons constantly. They accompanied them to daily physical, occupational and speech therapy; cleaned the drool from their chins; and suctioned liquid from their mouths.
For a few weeks after her son suffered a seizure at Kessler, Ms. Tallouzi pressed a shunt at the back of his head 150 times a day to drain liquid from his brain.
Each morning, she brushes his teeth, shaves him and applies his favorite cologne. ?They tell me he?s the best-smelling one here,? she said.
And when he opens his eyes, stares vacantly and softly moans, she tells him: ?It?s O.K., it?s Mommy. Nothing?s going to happen to you. You need a little suctioning? Hold on, let me get it.?
Kessler is one of only six centers in the country certified by federal officials as models for both spinal- and brain-injury research and rehabilitation. It is also rated the second best rehab facility in the nation by a U.S. News & World Report survey. But at least so far, there have been no miracles for these soldier-sons.
ROADSIDE and suicide bombs are the enemy weapons of choice in Afghanistan and Iraq, and for the 31,000 American troops wounded in these wars, traumatic brain injury has come to be known as the ?signature wound.? According to the Defense and Veterans Brain Injury Center, a research and treatment agency run by the Pentagon and the veterans department, 31 percent of the soldiers who required medical evacuation for battle-related wounds had traumatic brain injuries. This covers a broad spectrum, from concussions to the kind of devastating injuries suffered by the soldiers treated at Kessler.
Military officials have acknowledged it took awhile to detect this pattern and respond, and news accounts over the last few years have questioned the quality of rehabilitative care for veterans, including reports by Bob Woodruff of ABC, who himself suffered a traumatic brain injury in Iraq. But Dr. Barbara Sigford, the veterans department?s national director for rehabilitation, says that in 2005, the department added resources, staff and equipment to its four ?polytrauma? rehabilitation centers and they are now ?state of the art.? The centers are in Palo Alto, Richmond, Minneapolis and Tampa, Fla.
At the Senate Veterans? Affairs Committee hearing last March, Ms. Mettie testified that while the department was working to improve, there were still shortcomings.
?The V.A. is building their program, and I understand that it continues to make progress,? she said. ?Still, there are many private hospitals treating and rehabilitating patients like my son. It is unfair to deny us access to the same level of care you would choose for your children. At the same time, the V.A. must use these facilities as the resources they are, so one day, hopefully soon, the V.A. will be the facility of choice.?
Testifying at the same hearing was Dr. Bruce M. Gans, chief medical officer of Kessler, which has been in the rehab business since 1948 and opened a new brain injury center here a year ago. He invited Ms. Mettie to Kessler, and the V.A. agreed to pay ? at a cost ?upward of $300,000 for six months,? according to Gail Solomon, a Kessler spokeswoman. (Ms. Mettie calls this a first. Dr. Sigford of the veterans department says that she can?t be sure of that, but that virtually all seriously wounded troops use the veterans rehabilitation centers.)
The difference in care, Ms. Mettie said, has been ?night and day.?
In Palo Alto, she said, her son got twice-weekly 20-minute sessions of physical therapy and occupational therapy combined, and sessions were often canceled because therapists had to go to staff meetings or were seeing other patients. At Kessler, she said, five days a week her son received 90 minutes of physical therapy, 90 minutes of occupational therapy and 30 minutes of speech, and sessions did not get canceled.
Ms. Mettie also said medications were better managed at Kessler. Dr. Fellus of Kessler said that at Palo Alto, Specialist Mettie and Sergeant Douglas had been given muscle relaxants orally, a treatment that causes drowsiness and impairs cognitive function ? in soldiers whose brains are already severely damaged. At Kessler, doctors surgically inserted pumps in the abdominal walls of both soldiers to allow the muscle relaxant baclofen to go right into the spinal fluid, bypassing the brain and eliminating the side effects.
?You?re optimizing the brain functioning of these patients,? Dr. Fellus said. ?It allows them to show their best colors.?
Dr. Sigford said she couldn?t comment on the veterans department?s treatment of specific patients, but she said that if therapists at Palo Alto had determined that a soldier needed daily physical therapy, it would have been provided and that if a baclofen pump would have made a difference and the department couldn?t do the procedure, the department would have had it done at a private hospital. She said that at the polytrauma centers there is one therapist for every four patients, ?a very good ratio.? Kessler?s is one therapist for every two patients, Ms. Solomon said.
A 2006 report by the veterans department?s Office of Inspector General found that while patients in the military medical system were slower to get rehabilitation services than private care patients, the outcomes at the polytrauma centers were ?very similar? to model programs in the private sector.
AS happy as the mothers have been with Kessler, it is not because their sons have shown great progress.
Ms. Mettie said that every time her son had an operation, complications like blood infections and pneumonia seriously set him back. Asked if she felt there was a fully cognizant Evan trapped inside his body, she said, ?No, no.? Asked how much of his mind was left, she said: ?We don?t know. It?s up for interpretation.?
After six months, Specialist Mettie and his mother left Kessler on Nov. 13, 2007. Ms. Mettie and her husband, Dave, have placed their son in a skilled care facility near Selah until they can get their home remodeled to meet his needs. ?It was time to go home,? Ms. Mettie said. Her husband had been caring for their two teenage daughters and they wanted to make the family whole again, she said. ?We?d been gone 22 months. The nature of the injury is we can do this at home.?
Ms. Cullum sounded more optimistic ? her son, Sergeant Douglas, smiles a good deal, and she and his therapists feel that he is reacting to those around him. In mid-January, after six months, she and Blaine returned to Arizona. ?The recovery pace, it?s even less than baby steps,? she said. ?It?s like quarter baby steps, and then you have big steps back, and then you start moving forward again.?
Kessler officials said they appreciated that the government paid for the private care and, despite the expense, they said there was no pressure for the men to leave until they had completed the appropriate therapy. In both cases, Dr. Fellus said, ?We felt we?d done for them what we could.? When Specialist Mettie was being readied to go, a case manager from the veterans department flew here from Seattle, and spent two days videotaping the therapy he was receiving to make sure he got appropriate care when he returned to Washington State.
?I think the government?s trying to do the right thing,? Dr. Fellus said. ?I think they?re testing the waters, trying to figure out what people in a program like ours are capable of.?
Despite the cost, he believes it was worth the soldiers? coming to Kessler. If they are exposed to the best care, he said, there?s always the chance for a ?needle in the haystack? awakening.
?We?re providing the platform for the individual to demonstrate what they?re capable of at their best,? he said. ?The alternative is to linger on year after year wondering what could have been.?
During a long, exhausting session working with Sergeant Douglas last month, Oluropo Akeju, a Kessler physical therapist, explained it this way: ?If we can teach him to control one finger, he can surf the Internet. He can use an electronic device to control every appliance in the house. It completely changes the quality of life. Any activity is better than none. A person can have his respect and dignity. It?s not straining over small things ? these are big things.?
MS. Tallouzi, 53, a single parent, is the last of the military moms still here. She has paid for her 17 months on the road with savings, money from her son?s disability stipend and help from people who have heard of what she calls ?our journey.? The nearby Pleasantdale Ch?teau conference center has let her stay rent-free; a member of the local Elks lodge drives her back and forth to Kessler; and the National Guard in Essex County has helped with expenses.
She misses the two other women. ?Nobody else is going to understand,? she said. Though she is with her son every waking hour, she misses him, too.
Daniel Tallouzi played football in high school, and a year after graduating, joined the military, as his three uncles and his older brother, Christopher, 29, had before him. Two of the uncles each did three combat tours in Vietnam; Christopher served in Iraq. Ms. Tallouzi, who opposes the Iraq war but considers herself a strong supporter of the military, said Daniel flourished in the Army, becoming a helicopter electrician and reaching the rank of sergeant at 22.
The last time she saw him whole was May 2006 when he was home on leave. ?I miss his big Tallouzi hugs,? she said. ?I miss his laughter.? She misses how quickly he?d say, ?I love you, Mom?; how he brought his younger sister, Jenny, flowers during that visit; how he suddenly jumped up in her kitchen and did his spontaneous Daniel dance. ?There?s a lot to miss about Daniel,? she said.
For a recent physical therapy session, three aides and the therapist, Tiffany Teichs, lifted Sergeant Tallouzi onto a tilt bed in hopes of getting him into a near-vertical position to work on arm strength. They put several straps around his body and one around his head so it wouldn?t flop forward and then adjusted the bed to at a 65-degree angle. But the stress of being vertical was too much ? his heart rate shot up to 120 from 85, and Ms. Teichs quickly got him horizontal again. ?He could pass out,? she said, ?or he could code,? meaning stop breathing.
From the first time Ms. Tallouzi saw him after the mortar wound ? at a military hospital in Germany ? doctors were clear about how badly Sergeant Tallouzi?s brain was damaged. ?They kept saying, ?I?m so sorry, I?m so sorry,? ? she said.
Sergeant Tallouzi had been off-duty after working through the night at his post, Camp Taji in Baghdad, at the time of the enemy attack. He was rushing to get his gear when the mortar exploded, propelling a single piece of shrapnel behind his right ear and into his brain.
Ms. Tallouzi has seen the CT scans. ?They?ve showed me the dark spots ? where the brain?s just not functioning,? she said. After 17 months in four hospitals, she has become so knowledgeable, doctors and nurses ask her if she has a medical background.
She knows what they think, but she?s his mother, and she is not ready to think that. More than once, she has told a doctor, ?I don?t want you to treat him like he?s through.?
When she is asked, ?How long can you ... ?? she answers that she doesn?t know.
?I have to feel like I?ve done everything I can for Dan,? she said. ?I have to know that?s what I did and that anything I did, I did with the best intentions and my whole heart. And neither one of us will feel bad about it ? right, buddy??
http://www.nytimes.com/2008/02/10/nyregion/nyregionspecial2/10Rparent.html?_r=1&oref=slogin&pagewanted=all
