Mom's Story: Reality
It was at Walter Reed Hospital the reality of Chris’
condition was hitting me, I was going to have to fight to make sure he
had every opportunity for the best recovery he could have. Maybe this
isn’t fair to say but I honestly feel that if a patient is
not able to fully understand their own condition and assist in their
own recovery then it is up to a loved one to make sure the medical
profession understands what is in the best interest of the patient.
I’m not professing that I know neurology but I do know what
is acceptable care and what is not. I will say that it was at Walter
Reed Hospital that I started reading EVERYTHING I could get my hands on
about head injuries. I fought the hippocratic doctors who stated
“Every head injury is different.” Then in the next
breath said, “Our normal routine of medications and medicine
is ------.” This seems to be a major problem with some
neurology doctors. I did not understand how people who work in this
field every day did not understand my not wanting my son to be over
medicated as he was coming out of coma, they said it was to keep him
from being agitated. They found it easier to keep him sedated and in a
diaper than to help him communicate his need to use the bathroom, which
was one thing that was causing him to be agitated. I guess the shortage
of nursing staff and the overload of paperwork, in this country, deemed
this kind of care necessary.
**HINT: It is absolutely necessary to know what the level of care is to be expected. Don’t expect more than what the standards are for the hospital or rehab center, but do make sure the patient gets what their suppose to! Ask the charge nurse, what the daily care is supposed to be? Ask the department heads of Physical Therapy, Occupational Therapy, Speech, etc. How many times the patient will be seen per day, per week? Then it is up to you as a caregiver to fill in the blanks that won’t be covered, and it’s going to be up to you to insure that the care is what it’s suppose to be. Also ask questions! Make sure you understand what you can do to help in the recovery. Staff is only required to do so much, you on the other hand have a vested interest in this person, if you want results, learn what you can do to expedite the recovery.
The fortunate thing was Chris did not seem to have any life threatening medical problems. His brain pressure was with in normal limits and no bleeding, he had no broken bones, breathing was shallow but he was getting plenty of oxygen, the doctors kept on telling me he was medically stable. The co-ordinator for Chris’ care was wonderful; she is one of the PA’s who oversees head injury patients at Walter Reed. She and I saw, eye to eye on allot of issues, she gave me answers when others wouldn’t. She immediately requested that he be removed from the morphine they had him on, she requested a swallow test be done so the feeding tube could be removed, the list goes on and on. I know I could not have made it if she hadn’t been there. She was also the one who gave me permission to do what ever I thought necessary to help him in recovery. As a mother and a professional she knew that long after the doctors and therapists were gone it would be his family that was in it for the long haul. Chris had lost over a third of his body weight, from 180lbs to 124lbs, so there was a major concern about his calorie intake. I had to assure them that if the tube was removed I would be there to feed him, Chris himself decided that he had had it with that tube, He pulled it out! The next morning we started with real food, well it was mush to start but soon he was able to eat a more normal diet. Weeks went by and we still did not know if Chris could see or speak. One day I was sitting at the end of his bed and I held my hand up and made a fist and opened it and closed it over and over and said “Chris can you do this?” He held up his right hand and made a fist and opened and closed it! This was the first indication that he could see!!!! My sister, Diane, and her husband came to visit us in DC, it was during this time that Chris was going through the rediscovery stage, this is when most TBI patients fight having clothes or covers on. It is upsetting to most but is explained as part of the normal process of coming out of coma. We hoped so much that Chris would speak while my sister was there but that happen after they had gone home. This was the next mild stone it came when I was taking him for his afternoon walk, each afternoon as the flag was coming down and retreat was played I would get Chris into his wheelchair and bring him to the second floor. We would take a stroll around the building and I would carry on conversation as if he was talking too. I didn’t get any responses except nods and shaking of his head. Until one day out of the clear blue sky he says, “Mom, Gotta spit” I squatted down by his chair, in tears, and said, “Then Spit!” his response was, “Get the ---- outta the way!” not the profound words I was hoping for but, he said his first words. His voice was very deep and monotone and he was a man of few words but we knew he could speak. During Chris’ time at Walter Reed he was visited by many of the soldiers from his unit, they had come up from Ft. Bragg to again check on his condition. Chris recognized them and was very happy they were there to see him. I know that the support of his unit has been a driving force in his recovery and I will never be able to thank them enough.
Chris had been at Walter Reed Hospital for almost three weeks and arrangements were being made for him to enter the VA Hospital in Tampa, where he would undergo intensive therapy in the Defense Head Injury Program. As we were leaving Walter Reed, the PA I spoke of stopped us in the hall, she had noticed that he had been watching himself in the mirror in his room earlier, she asked him, “Who were you looking at in the mirror?” Chris’ response was “A Stud!” She and I looked at each other and just laughed; it was an important finding though, his sense of humor was intact! Humor is a high cognitive function so this was a great sign. With high hopes and great expectations Chris and I were heading to Tampa. Chris' Dad is retired from the Navy and I’m a military brat, I had visited many VA hospitals in the past and I had done my homework on this one. Everyone had told me that this was one of the best military rehab units with wonderful therapists, they would give him the skills he needed to truly be on the way to recovery.
**HINT: It is absolutely necessary to know what the level of care is to be expected. Don’t expect more than what the standards are for the hospital or rehab center, but do make sure the patient gets what their suppose to! Ask the charge nurse, what the daily care is supposed to be? Ask the department heads of Physical Therapy, Occupational Therapy, Speech, etc. How many times the patient will be seen per day, per week? Then it is up to you as a caregiver to fill in the blanks that won’t be covered, and it’s going to be up to you to insure that the care is what it’s suppose to be. Also ask questions! Make sure you understand what you can do to help in the recovery. Staff is only required to do so much, you on the other hand have a vested interest in this person, if you want results, learn what you can do to expedite the recovery.
The fortunate thing was Chris did not seem to have any life threatening medical problems. His brain pressure was with in normal limits and no bleeding, he had no broken bones, breathing was shallow but he was getting plenty of oxygen, the doctors kept on telling me he was medically stable. The co-ordinator for Chris’ care was wonderful; she is one of the PA’s who oversees head injury patients at Walter Reed. She and I saw, eye to eye on allot of issues, she gave me answers when others wouldn’t. She immediately requested that he be removed from the morphine they had him on, she requested a swallow test be done so the feeding tube could be removed, the list goes on and on. I know I could not have made it if she hadn’t been there. She was also the one who gave me permission to do what ever I thought necessary to help him in recovery. As a mother and a professional she knew that long after the doctors and therapists were gone it would be his family that was in it for the long haul. Chris had lost over a third of his body weight, from 180lbs to 124lbs, so there was a major concern about his calorie intake. I had to assure them that if the tube was removed I would be there to feed him, Chris himself decided that he had had it with that tube, He pulled it out! The next morning we started with real food, well it was mush to start but soon he was able to eat a more normal diet. Weeks went by and we still did not know if Chris could see or speak. One day I was sitting at the end of his bed and I held my hand up and made a fist and opened it and closed it over and over and said “Chris can you do this?” He held up his right hand and made a fist and opened and closed it! This was the first indication that he could see!!!! My sister, Diane, and her husband came to visit us in DC, it was during this time that Chris was going through the rediscovery stage, this is when most TBI patients fight having clothes or covers on. It is upsetting to most but is explained as part of the normal process of coming out of coma. We hoped so much that Chris would speak while my sister was there but that happen after they had gone home. This was the next mild stone it came when I was taking him for his afternoon walk, each afternoon as the flag was coming down and retreat was played I would get Chris into his wheelchair and bring him to the second floor. We would take a stroll around the building and I would carry on conversation as if he was talking too. I didn’t get any responses except nods and shaking of his head. Until one day out of the clear blue sky he says, “Mom, Gotta spit” I squatted down by his chair, in tears, and said, “Then Spit!” his response was, “Get the ---- outta the way!” not the profound words I was hoping for but, he said his first words. His voice was very deep and monotone and he was a man of few words but we knew he could speak. During Chris’ time at Walter Reed he was visited by many of the soldiers from his unit, they had come up from Ft. Bragg to again check on his condition. Chris recognized them and was very happy they were there to see him. I know that the support of his unit has been a driving force in his recovery and I will never be able to thank them enough.
Chris had been at Walter Reed Hospital for almost three weeks and arrangements were being made for him to enter the VA Hospital in Tampa, where he would undergo intensive therapy in the Defense Head Injury Program. As we were leaving Walter Reed, the PA I spoke of stopped us in the hall, she had noticed that he had been watching himself in the mirror in his room earlier, she asked him, “Who were you looking at in the mirror?” Chris’ response was “A Stud!” She and I looked at each other and just laughed; it was an important finding though, his sense of humor was intact! Humor is a high cognitive function so this was a great sign. With high hopes and great expectations Chris and I were heading to Tampa. Chris' Dad is retired from the Navy and I’m a military brat, I had visited many VA hospitals in the past and I had done my homework on this one. Everyone had told me that this was one of the best military rehab units with wonderful therapists, they would give him the skills he needed to truly be on the way to recovery.