Sean came home a week before our son, J, graduated from high school. It was a crazy busy week preparing for graduation and working in my classroom to end the year. When all was said and done and the last day finally came, we breathed a sigh of relief and went out with a few teachers for the traditional "Poets Club" meeting aka drinks after school.
It was a gorgeous day and we sat on the patio laughing and relaxing. We went home for supper and around 10 PM I decided I was going downstairs for a much-deserved bath in my jacuzzi tub.
On the last step down my foot slipped out from under me. My leg went one direction and my foot went the other. I had broken both bones in my leg just above the ankle and dislocated my ankle. The pain was excruciating. I screamed and yelled in a manner unbecomming of a lady. I'm sure I could be heard blocks away. It reminds me of the scene in A Christmas Story when Ralphie's father is working on the furnace and Ralphie says, "In the heat of battle, my father wove a tapestry of obscenity that as far as we know, is still hanging in space over Lake Michigan."
An ambulance ride, night in the ER, and surgery the following morning to put in more hardware than I care to think about. Then the good news. No pressure on the foot for two months. No walking. No driving. Well, crap. Now we had a house of five with two grownups who couldn't drive.
The girls played chauffer for all of our appointments. The kids and Sean took on the bulk of the work, buying groceries, cleaning, errands, walking the dog, while I tried in futility to find something worth watching on television.
With the blessing of my physical therapist I was walking by the first of August mostly without my crutches. Sean and I had the opportunity to attend the Blinded Veterans Association Convention in Portland, OR at the end of August. Between that and the start of the school year I was determined to leave the crutches behind. Everyone pitched in to help me get the classroom ready before we left on our trip.
Monday, August 2, 2010
The Windy City
The Windy City did not disappoint. Temps were in the 30s and 40s with winds gusting to 30 mph. Not the best touring weather, and definately made us cross outdoor activities off the list!
The girls and I took a trip to Chicago to visit Sean over Easter vacation. It was a grueling 12 hour drive (have I mentioned how much I despise driving now?) E kept me company, K managed to sleep almost the entire drive.
We visited the Field Museum, Shedd Aquarium, Navy Pier, went to a Bulls game and a White Sox game.
All in all it was a great trip and we were so happy to see him. And then it was Sunday and we had to drop Sean off at the hospital. It broke my heart to leave again and of course I cried. It was reassuring that he was enjoying his stay and he was feeling more independent, but I was still leaving him behind.
The girls and I took a trip to Chicago to visit Sean over Easter vacation. It was a grueling 12 hour drive (have I mentioned how much I despise driving now?) E kept me company, K managed to sleep almost the entire drive.
When we arrived in Chicago it was well after dark. The traffic and tollways were confusing. It seemed to me that only every third or fourth street actually had a street sign. I found the hotel easily, but it took well over an hour to figure out how to get to the hospital to pick up Sean. First, I went the wrong way. Then we turned around and tried to take the Mapquest shortcut. When that didn't work we started over and took what seemed to be the most confusing route, but it actually got us to the hospital. Turns out we had been right where we needed to be on the second attempt, but the neighborhood was so scary that I didn't drive down the road. There is not a single VA hospital sign until you reach the gates.
After my driving fiascos, we tried to take the metro as much as possible the remainder of the weekend, but there were a few places where Sean insisted I drive instead, mainly the Bulls and White Sox games. YIKES!! Traffic was awful! I didn 't know where I was or where I was going. I literally cried and drove down the freeway. And I had the blind man next to me trying to give me directions.
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| Sean and girls at Shedd Aquarium |
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| Girls at the White Sox game |
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| Sean and Melissa at Lake Michigan |
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| With the Luvabulls before the Bulls game |
All in all it was a great trip and we were so happy to see him. And then it was Sunday and we had to drop Sean off at the hospital. It broke my heart to leave again and of course I cried. It was reassuring that he was enjoying his stay and he was feeling more independent, but I was still leaving him behind.
Central Blind Rehabilitation Center
On February 27, 2009 Sean left for the Hines VA Blind Center. Our oldest daughter travelled to the Sioux Falls airport with us to send him off. It was a bittersweet day. I was relieved that he would finally be getting some assistance, since we clearly did not know how to manage vision loss at home, but once again I was sending my husband away. It was extremely difficult to drive out of the airport parking lot knowing I might not see him for another two months.
Sean received training in daily living skills for individuals with low vision: cooking, cleaning, household maintenance, braille, orientation and mobility, typing, assistive devices (gadgets) for the blind, cane training, organization, and computer skills.
The computer he uses is awesome! It has program called Zoomtext which allows him to enlarge the screen as much as he needs to read. He can scan documents to read on his computer. The program can also read material to him. He brought home different magnifiers and pocket magnifiers. He has a gadget that can scan his prescription labels and tell him what medication is in the bottle. There is another that can scan bar codes at the grocery store and one that tells the color of clothing. He has an Optron which projects an item/image on the table onto a larger viewing screen so he can read material or work on models and other projects.
Sean was seen by Dr. D, a neuro opthamologist, who measured his vision at count fingers at six inches. Given the health of his eyes and lack of evidence of optic neuritis, she determined the cause was most likely trauma to the brain due to the blast injury. She said his vision was not likely to improve.
He was given glasses with tinted lenses to help with photophobia, and prisms were put in his lenses to help minimize the double vision.
While in Chicago Sean had the opportunity to attend many Chicago Bulls games, Blackhawks hockey games, and a couple White Sox games. The clinic patients attended a golf tournament where they were able to golf with a guide as their "eyes."
On May 13th I flew to Chicago for the family education portion of his rehabilitation. I was given two days with the instructors to experience what Sean had been doing for the past two and a half months. I received some orientation and mobiltiy training along with some instruction on guiding a blind person. It's an amazing program and it was fantastic to meet the caring staff. I also got to meet some of the patients who were all very positive about their experiences.
I think the biggest change in Sean was his new found independence. He had become reliant on me for everything and this trip forced him to be on his own and learn that he could take care of himself. The other big change was that by learning to slow down and use the blind cane he no longer needed to use the walker. He was still dizzy and off-balance, but he had learned to feel his body and be more aware of how he was moving. He was glad to be rid of the rollator!
Sean loved his experieces at Hines. It opened new doors for him and brought him connections he never thought possible. Many of the activities and trips he participates in today would not have been possible without his making connections there.
Sean received training in daily living skills for individuals with low vision: cooking, cleaning, household maintenance, braille, orientation and mobility, typing, assistive devices (gadgets) for the blind, cane training, organization, and computer skills.
The computer he uses is awesome! It has program called Zoomtext which allows him to enlarge the screen as much as he needs to read. He can scan documents to read on his computer. The program can also read material to him. He brought home different magnifiers and pocket magnifiers. He has a gadget that can scan his prescription labels and tell him what medication is in the bottle. There is another that can scan bar codes at the grocery store and one that tells the color of clothing. He has an Optron which projects an item/image on the table onto a larger viewing screen so he can read material or work on models and other projects.
Sean was seen by Dr. D, a neuro opthamologist, who measured his vision at count fingers at six inches. Given the health of his eyes and lack of evidence of optic neuritis, she determined the cause was most likely trauma to the brain due to the blast injury. She said his vision was not likely to improve.
He was given glasses with tinted lenses to help with photophobia, and prisms were put in his lenses to help minimize the double vision.
While in Chicago Sean had the opportunity to attend many Chicago Bulls games, Blackhawks hockey games, and a couple White Sox games. The clinic patients attended a golf tournament where they were able to golf with a guide as their "eyes."
On May 13th I flew to Chicago for the family education portion of his rehabilitation. I was given two days with the instructors to experience what Sean had been doing for the past two and a half months. I received some orientation and mobiltiy training along with some instruction on guiding a blind person. It's an amazing program and it was fantastic to meet the caring staff. I also got to meet some of the patients who were all very positive about their experiences.
I think the biggest change in Sean was his new found independence. He had become reliant on me for everything and this trip forced him to be on his own and learn that he could take care of himself. The other big change was that by learning to slow down and use the blind cane he no longer needed to use the walker. He was still dizzy and off-balance, but he had learned to feel his body and be more aware of how he was moving. He was glad to be rid of the rollator!
Sean loved his experieces at Hines. It opened new doors for him and brought him connections he never thought possible. Many of the activities and trips he participates in today would not have been possible without his making connections there.
Downhill
January and February 2009 were hard months. The doctors ordered another round of IV steriods which did not make any improvement in Sean's vision. He had several eye exams and still his vision remained between 20/400 and 20/800. Sean was now legally blind. He still had some usable vision at close range and could see shapes and shadows. The decision was made to send Sean to the Central Blind Rehabilitation Center at the Hines VA in Chicago, IL for training and rehabilitation at the end of February.
During this time, perhaps due to the increased stress from losing his vision, Sean had several disturbing episodes. One weekend we drove to Jamestown, ND to drop our youngest daughter off to visit her family. The drive is a little over three hours round trip. As we neared home, Sean sat up in his seat and asked, "What just happened? Where was I?" I reminded him that we had just dropped K off with her grandma and were now almost home. No matter how many times we went over it, Sean did not remember any of the trip. The next day, he asked where K was, and still did not remember the drive to Jamestown.
Another day he was getting ready for an appointment and met me at the front door saying, "Ready to go." He was wearing a pair of shorts, sandals, and no shirt. It was well below 0 and snowing outside.
One night as we were getting into bed, Sean lost his balance and fell into the bedroom window, breaking the inner panel of glass. Fortunately, the curtain caught in the window sill and prevented him from falling all the way through the outer pane and to the ground outside.
PT issued him a rollator walker to aid in preventing his falls. The SD sidewalks and roads were icy and snowpacked and he was having many more falls and difficulty getting around. It was quite an insult to his pride to be using a walker, but it did make him feel more safe and steady.
At the doctor's office while making an appointment, Sean said he needed to call the fire department. When I asked him why, he replied, "I'll need to get the day off work." I had to tell him that he no longer worked at the fire department. He asked, "What happened? Did I get fired? What do I do now?" It took about half an hour to bring him back to the reality of where we were and for him to remember that he medically retired the previous summer. This is not an isolated incident. Over the last year there have been three or four times that Sean has mentioned going to work, checking his schedule, etc. It is always heartbreaking for him to hear that he is no longer working at the fire department.
A scarf on a chair in a waiting room set Sean into a trembling fear and mumbling incoherently. I had to remove the scarf to the nurses desk, and we still had to leave the waiting room to another area. He obsessed over the scarf most of the day.
I was relieved that he would be getting some inpatient care at the Hines VA.
During this time, perhaps due to the increased stress from losing his vision, Sean had several disturbing episodes. One weekend we drove to Jamestown, ND to drop our youngest daughter off to visit her family. The drive is a little over three hours round trip. As we neared home, Sean sat up in his seat and asked, "What just happened? Where was I?" I reminded him that we had just dropped K off with her grandma and were now almost home. No matter how many times we went over it, Sean did not remember any of the trip. The next day, he asked where K was, and still did not remember the drive to Jamestown.
Another day he was getting ready for an appointment and met me at the front door saying, "Ready to go." He was wearing a pair of shorts, sandals, and no shirt. It was well below 0 and snowing outside.
One night as we were getting into bed, Sean lost his balance and fell into the bedroom window, breaking the inner panel of glass. Fortunately, the curtain caught in the window sill and prevented him from falling all the way through the outer pane and to the ground outside.
PT issued him a rollator walker to aid in preventing his falls. The SD sidewalks and roads were icy and snowpacked and he was having many more falls and difficulty getting around. It was quite an insult to his pride to be using a walker, but it did make him feel more safe and steady.
At the doctor's office while making an appointment, Sean said he needed to call the fire department. When I asked him why, he replied, "I'll need to get the day off work." I had to tell him that he no longer worked at the fire department. He asked, "What happened? Did I get fired? What do I do now?" It took about half an hour to bring him back to the reality of where we were and for him to remember that he medically retired the previous summer. This is not an isolated incident. Over the last year there have been three or four times that Sean has mentioned going to work, checking his schedule, etc. It is always heartbreaking for him to hear that he is no longer working at the fire department.
A scarf on a chair in a waiting room set Sean into a trembling fear and mumbling incoherently. I had to remove the scarf to the nurses desk, and we still had to leave the waiting room to another area. He obsessed over the scarf most of the day.
I was relieved that he would be getting some inpatient care at the Hines VA.
Sunday, August 1, 2010
I'm Dreaming of a Normal Christmas. . .
. . . one where my husband isn't out of the country, isn't out of the state on med hold, where we are all together at home and celebrating.
But wait, there's a catch.
On December 18, 2008, Sean came to my classroom in a panic. He had suddenly lost his vision and could only see colors and shapes around him. There was a stabbing pain in his eyes that he described as an ice pick jabbing them. I made arrangements to leave work and we went to the ER.
Sean had an MRI and a CT scan. They gave him several shots of pain medication before the pain finally backed off, though it never fully went away.
God bless the ER doctors, but let me just say that I wish we had a VA facility nearby. The doctors we saw wanted to "fix" the problem. We spent a lengthy time going over the history and where this all started. They did not have access to his medical records, so they were doing the best they could. After five hours I finally convinced them to send us home so we could consult with Dr. H and the neurologist at the VA after they had a chance to see the test results in the morning.
The VA doctors could find no evidence from the tests to explain what was going on. We were referred to an optometrist in town the next day. Following the exam he said he could find nothing wrong with the health of the eyes despite Sean's vision now being 20/800. We were advised to treat the pain as best we could and follow up with the doctors at the VA.
Dr. H made an appointment with an opthamologist in Sioux Falls for the end of the month. However, Sean's eyes had other plans. On December 22nd we returned to the ER just before bedtime. The stabbing pain was back with a vengeance. This time they did a CT scan and a spinal tap, both with unremarkable results. We spent another five hours in the ER before returning home with Sean again having received several shots of pain medication.
After a very late night I dragged myself to work in the morning and desperately needed a caffeine IV. Dr. H called and said he wanted to see us in Sioux Falls the following day (Christmas Eve!) and had also arranged the opthamology appoinment with Dr. W and a neurology exam with Dr. F. So once school was out for the day I packed us an overnight bag and we said goodbye to the kids, reassuring them we would be home in plenty of time to spend with them on Christmas Eve.
There were several conflicting ideas involved with seeing so many doctors in one day. Dr. F said it was optic neuritis, and ordered a dose of IV steroids to calm the inflamation of the optic nerve. Dr. W and Dr. H wanted an MRI to be sure. Dr. F said he is the neurologist, he doesn't need an MRI to know what it is. Dr. H ordered it anyway. Dr. H also thought Sean should be admitted to the hospital to receive steroid treatment over several days. Dr. F said it could be done in a couple hours.
I had called my dad to let them know we weren't sure if we would make it home for Christmas, or if we would be staying. The kids were calling all day to see when we would be home, what we were making for dinner, were we going to open any presents. I never told them that we might not make it back in time. I didn't want to disappoint them, or myself.
Finally, we had an order for the MRI. It took almost two hours at the local hospital to finish. When we returned to the VA hospital, there was almost no one left. All of our doctors had left to start the holiday. There was an order at the ER for Sean to have IV steriods before he went home and we were to come back the following week to see the doctors.
We finally got on the road late that evening and arrived home around 10:30 PM. The kids had fed themselves. We let them open the Wii we had purchased for a family gift and everyone went to bed, cranky and tired. It was hardly the Christmas we had been wishing for.
But wait, there's a catch.
On December 18, 2008, Sean came to my classroom in a panic. He had suddenly lost his vision and could only see colors and shapes around him. There was a stabbing pain in his eyes that he described as an ice pick jabbing them. I made arrangements to leave work and we went to the ER.
Sean had an MRI and a CT scan. They gave him several shots of pain medication before the pain finally backed off, though it never fully went away.
God bless the ER doctors, but let me just say that I wish we had a VA facility nearby. The doctors we saw wanted to "fix" the problem. We spent a lengthy time going over the history and where this all started. They did not have access to his medical records, so they were doing the best they could. After five hours I finally convinced them to send us home so we could consult with Dr. H and the neurologist at the VA after they had a chance to see the test results in the morning.
The VA doctors could find no evidence from the tests to explain what was going on. We were referred to an optometrist in town the next day. Following the exam he said he could find nothing wrong with the health of the eyes despite Sean's vision now being 20/800. We were advised to treat the pain as best we could and follow up with the doctors at the VA.
Dr. H made an appointment with an opthamologist in Sioux Falls for the end of the month. However, Sean's eyes had other plans. On December 22nd we returned to the ER just before bedtime. The stabbing pain was back with a vengeance. This time they did a CT scan and a spinal tap, both with unremarkable results. We spent another five hours in the ER before returning home with Sean again having received several shots of pain medication.
After a very late night I dragged myself to work in the morning and desperately needed a caffeine IV. Dr. H called and said he wanted to see us in Sioux Falls the following day (Christmas Eve!) and had also arranged the opthamology appoinment with Dr. W and a neurology exam with Dr. F. So once school was out for the day I packed us an overnight bag and we said goodbye to the kids, reassuring them we would be home in plenty of time to spend with them on Christmas Eve.
There were several conflicting ideas involved with seeing so many doctors in one day. Dr. F said it was optic neuritis, and ordered a dose of IV steroids to calm the inflamation of the optic nerve. Dr. W and Dr. H wanted an MRI to be sure. Dr. F said he is the neurologist, he doesn't need an MRI to know what it is. Dr. H ordered it anyway. Dr. H also thought Sean should be admitted to the hospital to receive steroid treatment over several days. Dr. F said it could be done in a couple hours.
I had called my dad to let them know we weren't sure if we would make it home for Christmas, or if we would be staying. The kids were calling all day to see when we would be home, what we were making for dinner, were we going to open any presents. I never told them that we might not make it back in time. I didn't want to disappoint them, or myself.
Finally, we had an order for the MRI. It took almost two hours at the local hospital to finish. When we returned to the VA hospital, there was almost no one left. All of our doctors had left to start the holiday. There was an order at the ER for Sean to have IV steriods before he went home and we were to come back the following week to see the doctors.
We finally got on the road late that evening and arrived home around 10:30 PM. The kids had fed themselves. We let them open the Wii we had purchased for a family gift and everyone went to bed, cranky and tired. It was hardly the Christmas we had been wishing for.
A New Way of Life
Sean was not adjusting well to being unemployed. He was more moody and irritable than before. His pain was worse and he spent his days laying on the couch when he didn't have appointments. Since I was working full-time, he had to use the city shuttle service to get to and from most of his appointments in town. I would still take off work to attend his counseling appointments and when he needed to travel to Sioux Falls.
When I was at work Sean would call me four or five times a day in addition to seeing me when I came home at lunch. He would call to check in, to ask where his wallet was, to see when I would be home. It was difficult to manage my first grade classroom with so many interruptions. I decided it was time to find him a job. While it wasn't reasonable to expect Sean to go back to work, I knew he needed a purpose. With the permission of my principal I started to bring Sean to the school in the afternoons. He helped with clerical work and projects. The kindergarten teachers quickly put him to work several times a week helping with centers in their classrooms. There were two autistic boys in those classes, and Sean was able to help keep them on task. It worked wonderfully. Sean had a reason to get out of the house every day, and I could concentrate on my work and not worry so much about him being home alone.
I was constantly worried about Sean falling and hurting himself. I was afraid he would get confused and leave the house. He would start to cook and forget what he was doing and leave the stove on. Knowing he was safe was a big relief.
Yet it was awkward having him at work. When I went into the lounge at recess, he was there, after work he was in my room. At the end of the day we went home and he was there. I was used to him working 24 hour shifts, or being out of the country. It was a big adjustment for me to have him around all the time. Sometimes it felt like everyone was asking about him and wanting to know how he was doing. . . and we were together so much. . . .and there was no "me."
The role of caregiver superseded the role of partner. We were no longer a couple, but I felt like I was leading him here and there and taking him with me where ever I went. When I wasn't taking care of Sean I was taking care of the kids or attending their activities. Three kids in high school brings a lot of extra duties. And when I was not doing that, I was working or planning for school, or doing laundry, cleaning, buying groceries, taking someone to the doctor.
Yet we didn't have it so bad. There were others much less fortunate coming out of this war. There were others who would never come home.
When I was at work Sean would call me four or five times a day in addition to seeing me when I came home at lunch. He would call to check in, to ask where his wallet was, to see when I would be home. It was difficult to manage my first grade classroom with so many interruptions. I decided it was time to find him a job. While it wasn't reasonable to expect Sean to go back to work, I knew he needed a purpose. With the permission of my principal I started to bring Sean to the school in the afternoons. He helped with clerical work and projects. The kindergarten teachers quickly put him to work several times a week helping with centers in their classrooms. There were two autistic boys in those classes, and Sean was able to help keep them on task. It worked wonderfully. Sean had a reason to get out of the house every day, and I could concentrate on my work and not worry so much about him being home alone.
I was constantly worried about Sean falling and hurting himself. I was afraid he would get confused and leave the house. He would start to cook and forget what he was doing and leave the stove on. Knowing he was safe was a big relief.
Yet it was awkward having him at work. When I went into the lounge at recess, he was there, after work he was in my room. At the end of the day we went home and he was there. I was used to him working 24 hour shifts, or being out of the country. It was a big adjustment for me to have him around all the time. Sometimes it felt like everyone was asking about him and wanting to know how he was doing. . . and we were together so much. . . .and there was no "me."
The role of caregiver superseded the role of partner. We were no longer a couple, but I felt like I was leading him here and there and taking him with me where ever I went. When I wasn't taking care of Sean I was taking care of the kids or attending their activities. Three kids in high school brings a lot of extra duties. And when I was not doing that, I was working or planning for school, or doing laundry, cleaning, buying groceries, taking someone to the doctor.
Yet we didn't have it so bad. There were others much less fortunate coming out of this war. There were others who would never come home.
Notes from the Minneapolis VA
In an effort to save myself some time I have copied and pasted notes written to our families while Sean was in the Minneapolis VA in November 2008.
Sunday: Sean and I are leaving this morning for a trip to the Minneapolis VA hospital where he will be monitored for a week to measure possible seizure activity. He has weird episodes where he is "zoned out" and then really confused. These episodes might be absence seizures. He will be hooked to monitors and videoed for a week to record his brain activity.
Tuesday: Sean is confined to the hospital with 23 electrodes glued to his head and under 24 hour video/audio monitoring. He's a good patient and had several episodes the first morning to show that neurology staff what they are dealing with! He can move from the bed, to the chair, and back. He was sleep deprived yesterday, allowed two 1-hour naps during a 15 hour period. Not sure if they will continue this. He is in very good spirits. The neurology team keeps coming in to do the pin-poke test on his arms and legs (to gauge his decreased sensation in the extremities) and nodding their heads in general confusion. He is a mystery, it seems.
I feel so bad that Sean is stuck in that dingy hospital room with nothing to do but watch crappy cable. He will be sleep-deprived again tonight, so he can sleep for @ 2 hours between midnight and 2 PM tomorrow. He is off all meds, including those for abdominal pain and headache. He was seen by GI due to the abdominal pain (the pain he always has), so he can't eat or drink tonight and will have a CT scan in the morning. Can't quite figure that out since they told him leaving the room would ruin the brain testing, but they are taking him out anyway. But through it all, he remains happy and friendly.
Wednesday: Today did not start out well. Sean had an episode that involved the staring, then he felt sick and finally he was semi-alert and aware, but was struggling to talk and sounded like a stroke patient. This lasted for about 45 minutes and then happened again later in the morning. The rest of the day was uneventful. I'm glad they are getting all this on tape, and mostly I'm glad that someone besides myself and the kids is finally witnessing these events!
I have to laugh, though. The doctors keep poking him with the pin, and pushing or pulling on his arms and legs, or shining the flashlight in his eyes and saying "Hmm..." Is that a good sign? Several times today, "Hmm..."
Thursday: No significant episodes today (couple very brief almost-episodes that went away almost as fast as they started), but a rough day none-the-less When I got to the hospital I said, "Hi, how are you?" Sean replied, "No sleep, no food, no coffee, no meds."
They did disconnect him for an hour for the CT scan of the abdomen. I guess it doesn't really ruin the brain testing, just pisses off the lady who is in charge of hooking/unhooking him from the monitor. Sean had an allergic reaction to the contrast injection so he had to be given some Benadryl...during his period of sleep deprivation. "Here, take this sedative...now be sure to stay awake!"
When he was finally able to go to sleep, he couldn't do anything more than doze as his head and stomach were causing him great pain. This afternoon he was extremely nauseated and dizzy. I hope he will be able to get some sleep tonight.
They will release him sometime tomorrow. Hopefully the doctors will be able to tell us something, but realistically they will probably need to write reports and send them to the neurologist in Sioux Falls who will then schedule a follow-up with us (that could take at least a month). Not sure if they will make any recommendations on the medications, but since they took him off cold turkey and he will jump start again this weekend I don't think that can all be good for his body.
Friday: Scratching heads here....
The doctors discussed the week's results with us before discharging Sean. Apparently the episodes Sean has been having are not the typical type of seizures that send out measurable electrical impulses in the brain. Sean's episodes are not sending out those electrical impulses. There was no questionable acitivity measured this week. None. This does not mean he has no brain activity (he doesn't think this joke is funny...) just that during all the spells, including the one where he couldn't speak, there was no unusual activity in his brain.
The good news is that since those impulses are not going out, they are also not doing damage to the brain. More good news (and we've heard this phrase before) is that it may or may not improve over time.
So where does that leave us? These are not seizures, not epileptic, not neurological in nature.
They recommended Sean go off all meds and see what happens...we have chosen to see our regular VA neurologist and polytrauma physician. They also made a firm recommendation that Sean does not drive until he is free of these episodes (6 months MN law, 12 months SD law) and can safely drive without vacant spells and the ensuing confusion. I am backing this one 100%. The kids and I have been trying to convince him not to drive for several months. He does not appear to see things around him, and drives recklessly.
So in the end it is good news, yet we don't know what to do with it.
Sunday: Sean and I are leaving this morning for a trip to the Minneapolis VA hospital where he will be monitored for a week to measure possible seizure activity. He has weird episodes where he is "zoned out" and then really confused. These episodes might be absence seizures. He will be hooked to monitors and videoed for a week to record his brain activity.
Tuesday: Sean is confined to the hospital with 23 electrodes glued to his head and under 24 hour video/audio monitoring. He's a good patient and had several episodes the first morning to show that neurology staff what they are dealing with! He can move from the bed, to the chair, and back. He was sleep deprived yesterday, allowed two 1-hour naps during a 15 hour period. Not sure if they will continue this. He is in very good spirits. The neurology team keeps coming in to do the pin-poke test on his arms and legs (to gauge his decreased sensation in the extremities) and nodding their heads in general confusion. He is a mystery, it seems.
I feel so bad that Sean is stuck in that dingy hospital room with nothing to do but watch crappy cable. He will be sleep-deprived again tonight, so he can sleep for @ 2 hours between midnight and 2 PM tomorrow. He is off all meds, including those for abdominal pain and headache. He was seen by GI due to the abdominal pain (the pain he always has), so he can't eat or drink tonight and will have a CT scan in the morning. Can't quite figure that out since they told him leaving the room would ruin the brain testing, but they are taking him out anyway. But through it all, he remains happy and friendly.
Wednesday: Today did not start out well. Sean had an episode that involved the staring, then he felt sick and finally he was semi-alert and aware, but was struggling to talk and sounded like a stroke patient. This lasted for about 45 minutes and then happened again later in the morning. The rest of the day was uneventful. I'm glad they are getting all this on tape, and mostly I'm glad that someone besides myself and the kids is finally witnessing these events!
I have to laugh, though. The doctors keep poking him with the pin, and pushing or pulling on his arms and legs, or shining the flashlight in his eyes and saying "Hmm..." Is that a good sign? Several times today, "Hmm..."
Thursday: No significant episodes today (couple very brief almost-episodes that went away almost as fast as they started), but a rough day none-the-less When I got to the hospital I said, "Hi, how are you?" Sean replied, "No sleep, no food, no coffee, no meds."
They did disconnect him for an hour for the CT scan of the abdomen. I guess it doesn't really ruin the brain testing, just pisses off the lady who is in charge of hooking/unhooking him from the monitor. Sean had an allergic reaction to the contrast injection so he had to be given some Benadryl...during his period of sleep deprivation. "Here, take this sedative...now be sure to stay awake!"
When he was finally able to go to sleep, he couldn't do anything more than doze as his head and stomach were causing him great pain. This afternoon he was extremely nauseated and dizzy. I hope he will be able to get some sleep tonight.
They will release him sometime tomorrow. Hopefully the doctors will be able to tell us something, but realistically they will probably need to write reports and send them to the neurologist in Sioux Falls who will then schedule a follow-up with us (that could take at least a month). Not sure if they will make any recommendations on the medications, but since they took him off cold turkey and he will jump start again this weekend I don't think that can all be good for his body.
Friday: Scratching heads here....
The doctors discussed the week's results with us before discharging Sean. Apparently the episodes Sean has been having are not the typical type of seizures that send out measurable electrical impulses in the brain. Sean's episodes are not sending out those electrical impulses. There was no questionable acitivity measured this week. None. This does not mean he has no brain activity (he doesn't think this joke is funny...) just that during all the spells, including the one where he couldn't speak, there was no unusual activity in his brain.
The good news is that since those impulses are not going out, they are also not doing damage to the brain. More good news (and we've heard this phrase before) is that it may or may not improve over time.
So where does that leave us? These are not seizures, not epileptic, not neurological in nature.
They recommended Sean go off all meds and see what happens...we have chosen to see our regular VA neurologist and polytrauma physician. They also made a firm recommendation that Sean does not drive until he is free of these episodes (6 months MN law, 12 months SD law) and can safely drive without vacant spells and the ensuing confusion. I am backing this one 100%. The kids and I have been trying to convince him not to drive for several months. He does not appear to see things around him, and drives recklessly.
So in the end it is good news, yet we don't know what to do with it.
Ch-Ch-Ch-Changes
Over the next few months there was a gradual deterioration of Sean's condition. He was falling frequently. His sense of smell was gone. There were slight tremors in his hands. When he was falling asleep, his arms and legs would jerk and twitch, sometimes continuing throughout the night.
Sean's vision continued to worsen. He had almost no night vision and was extremely sensitive to bright lights. He had nystagmus, an involuntary rhythmic shaking or wobbling of the eyes. He had double vision starting at 60 degrees peripherally.
We travelled to Yankton, SD to the American Pain Relief Institute where Sean received radio frequency treatment for his chronic neck and headache. While he had some relief intitially, the effects were short-lived.
Sean was losing sensation in his hands and feet. While working on the house, he cut his thumb to the bone with a table saw. He did not feel the cut, but stopped when he saw blood. The ER doctor was able to put in eight stitches without any anesthetic.
An electomyography (EMG) test was done to measure how the nerves in his arms and legs were working. The test determined that the nerves were working properly. The lack of sensation was caused by either the message not travelling to the brain from the nerves, or the brain misinterpreting the message.
Despite the diagnoses and the extensive research I had done, I was still confused by it all. These changes in my husband were frustrating for all of us. He would ask, "Why did this happen?" "Why can't I do things like I used to?" I felt lost with all the changes. I didn't know how to help him. I didn't know how to explain it all to our children. I didn't know how to deal with the changes myself. Although we had been dealing with changes in one form or another for over two years, this was new and frightening territory.
Sean's vision continued to worsen. He had almost no night vision and was extremely sensitive to bright lights. He had nystagmus, an involuntary rhythmic shaking or wobbling of the eyes. He had double vision starting at 60 degrees peripherally.
We travelled to Yankton, SD to the American Pain Relief Institute where Sean received radio frequency treatment for his chronic neck and headache. While he had some relief intitially, the effects were short-lived.
Sean was losing sensation in his hands and feet. While working on the house, he cut his thumb to the bone with a table saw. He did not feel the cut, but stopped when he saw blood. The ER doctor was able to put in eight stitches without any anesthetic.
An electomyography (EMG) test was done to measure how the nerves in his arms and legs were working. The test determined that the nerves were working properly. The lack of sensation was caused by either the message not travelling to the brain from the nerves, or the brain misinterpreting the message.
Despite the diagnoses and the extensive research I had done, I was still confused by it all. These changes in my husband were frustrating for all of us. He would ask, "Why did this happen?" "Why can't I do things like I used to?" I felt lost with all the changes. I didn't know how to help him. I didn't know how to explain it all to our children. I didn't know how to deal with the changes myself. Although we had been dealing with changes in one form or another for over two years, this was new and frightening territory.
TBI
In January 2008 Sean was evaluated by Dr. H from the polytrauma unit at the Sioux Falls VA Hospital. The polytrauma team is comprised of a medical doctor, social worker, physical therapy, speech therapy, psychology, occupational therapy, and recreational thereapy. He was also underwent a battery of tests including an MRI, EEG, and a neuropsychological evaluation. He was further evaluated by Dr. Z of neurologist and Dr. M of psychiatry.
Sean was diagnosed with post-concussive syndrome, or mild traumatic brain injury (TBI) due to a blast injury, the most significant damage likely occurring on March 25, 2006 (as described in the post "What Went on Over There?"). The blasts from these mortars send out shock waves which shake the brain and can cause bruising and tearing in the brain. Injuries such as these build upon each other and each subsequent incident causes further damage.
He had additional diagnoses of PTSD, depression, anxiety, tinnitus (ringing in the ears), residual abdominal pain subsequent to multiple bowel infections, persistent headache, recurrent skin rash on the legs, persistent nausea and dizziness, and irritable bowel syndrome.
Traumatic brain injury, or TBI, has been labeled a "signature wound" of the current conflicts in Iraq and Afghanistan due to the frequency with which it is being reported. TBI can occur in both open head injuries, involving some form of penetration of the skull, and closed head injuries, where there is no visible damage to the head. TBI can be an "invisible" wound which may not be detected in theater, but rather comes to light when the service member returns home and family members notice problems.
In Sean's case, the salmonella and c diff infections and subsequent GI symptoms masked the TBI symptoms. Unfortunately, that meant that Sean spent two years with an undiagnosed brain injury. It saddens me that he was struggling for so long and we had no idea why or how to handle the things that were going on.
Sean's attention, decision-making, information processing, and memory were impacted. While his long-term memory is good and intact, his short-term memory is poor. For example, he forgets what he is supposed to do, or asks how to do things he could previously do on his own. He repeats questions, "What is today?" "What do I have to do?" "Where should I go?"
Decision making is very difficult for Sean. He can't decide which brand of toothpaste to buy, or which shirt to wear. He questions the decisions he makes over and over.
Sean has trouble with multiple-step tasks. He needs more time to complete tasks and process information. He struggles with planning and organization.
He is unable to process information in new situations, especially if there is a lot of information to process at once such as busy stores, noisy situations, crowded areas. He is easily upset by strange noises, beeps, alarms.
Following the diagnoses, Sean was put on light duty a the fire department. He was allowed to keep his job with modified hours and duties while he waited for a decision on medical retirement. In June 2008, Sean was officially medically retired from the fire department after 14 years of dedicated service. This was a huge blow to Sean. He had been working as an EMT since he began volunteering with his hometown ambulance at age 17 and had worked his way up to the position of lieutenant at the Aberdeen Fire Department.
We began to structure his days, organize his daily activities, and tried to include exercise and recreation when he was feeling up to it. Many days the pain and fatigue made it difficult for him to do much. He was receiving physical therapy at the warm water pool and was using a cane to help with balance as he had been falling frequently. He started speech therapy to help with memory, and occupational therapy to help him with organization. He would continue to see psychology and psychiatry on a regular basis along with regular follow up with the polytrauma team.
Dr. H told us they would do the best to help him manage the pain and symptoms with medication and therapy, but he might never recover fully. We tried to change our focus from finding what was wrong and making sense of it, to finding a quality of life for ourselves and our children.
Sean was diagnosed with post-concussive syndrome, or mild traumatic brain injury (TBI) due to a blast injury, the most significant damage likely occurring on March 25, 2006 (as described in the post "What Went on Over There?"). The blasts from these mortars send out shock waves which shake the brain and can cause bruising and tearing in the brain. Injuries such as these build upon each other and each subsequent incident causes further damage.
He had additional diagnoses of PTSD, depression, anxiety, tinnitus (ringing in the ears), residual abdominal pain subsequent to multiple bowel infections, persistent headache, recurrent skin rash on the legs, persistent nausea and dizziness, and irritable bowel syndrome.
Traumatic brain injury, or TBI, has been labeled a "signature wound" of the current conflicts in Iraq and Afghanistan due to the frequency with which it is being reported. TBI can occur in both open head injuries, involving some form of penetration of the skull, and closed head injuries, where there is no visible damage to the head. TBI can be an "invisible" wound which may not be detected in theater, but rather comes to light when the service member returns home and family members notice problems.
In Sean's case, the salmonella and c diff infections and subsequent GI symptoms masked the TBI symptoms. Unfortunately, that meant that Sean spent two years with an undiagnosed brain injury. It saddens me that he was struggling for so long and we had no idea why or how to handle the things that were going on.
Sean's attention, decision-making, information processing, and memory were impacted. While his long-term memory is good and intact, his short-term memory is poor. For example, he forgets what he is supposed to do, or asks how to do things he could previously do on his own. He repeats questions, "What is today?" "What do I have to do?" "Where should I go?"
Decision making is very difficult for Sean. He can't decide which brand of toothpaste to buy, or which shirt to wear. He questions the decisions he makes over and over.
Sean has trouble with multiple-step tasks. He needs more time to complete tasks and process information. He struggles with planning and organization.
He is unable to process information in new situations, especially if there is a lot of information to process at once such as busy stores, noisy situations, crowded areas. He is easily upset by strange noises, beeps, alarms.
Following the diagnoses, Sean was put on light duty a the fire department. He was allowed to keep his job with modified hours and duties while he waited for a decision on medical retirement. In June 2008, Sean was officially medically retired from the fire department after 14 years of dedicated service. This was a huge blow to Sean. He had been working as an EMT since he began volunteering with his hometown ambulance at age 17 and had worked his way up to the position of lieutenant at the Aberdeen Fire Department.
We began to structure his days, organize his daily activities, and tried to include exercise and recreation when he was feeling up to it. Many days the pain and fatigue made it difficult for him to do much. He was receiving physical therapy at the warm water pool and was using a cane to help with balance as he had been falling frequently. He started speech therapy to help with memory, and occupational therapy to help him with organization. He would continue to see psychology and psychiatry on a regular basis along with regular follow up with the polytrauma team.
Dr. H told us they would do the best to help him manage the pain and symptoms with medication and therapy, but he might never recover fully. We tried to change our focus from finding what was wrong and making sense of it, to finding a quality of life for ourselves and our children.
What Went on Over There?
Many of the things I have heard Sean tell the doctors and therapists were news to me. These were the things he kept from me to make sure I felt he was safe. These were also things he tried to hide from himself and not remember.
During his service in Iraq, Sean had two falls from 5 ton trucks in which he "saw stars." He was also involved in at least three mortar attacks where he was in close proximity to the blasts.
The most significant blast occurred in March of 2006 a week before he came home on leave. A group of soldiers was standing in a parking lot when several mortar rounds came in. The warning sirens were going off for a different area. The first blast hit at the perimeter fence approximately 80 yards away. The second was about 50 yards out and the third around 20 yards out. The fourth round landed within 10-15 feet of where they were standing. Sean reports that he was pelted with rocks, saw stars and bright light, and may have been unconcious for a brief time. He was not wearing protective gear.
Sean says that following the blast he was dizzy, had a headache, marked hearing loss, had light sensitivity, and his night vision was significantly decreased. These symptoms did not improve over time.
There were also many occasions where mortars and rockets were fired into the ASP (ammunition supply point). He tells of many nights when he wouldn't hear the blast or siren, but would wake up on the floor of his hut having been thrown from his bunk, or rolling for cover.
Another duty of the ammunition inspectors was to clean out vehicles in the "boneyard." This is the place on base where all the broken down or exploded vehicles are parked. Each vehicle needed to be throughly inspected for ammunition to be destroyed. These vehicles were not cleaned out before they came into the boneyard. Sean says he is haunted by images of body parts and blood that he encountered while rummaging through the vehicles.
During his service in Iraq, Sean had two falls from 5 ton trucks in which he "saw stars." He was also involved in at least three mortar attacks where he was in close proximity to the blasts.
The most significant blast occurred in March of 2006 a week before he came home on leave. A group of soldiers was standing in a parking lot when several mortar rounds came in. The warning sirens were going off for a different area. The first blast hit at the perimeter fence approximately 80 yards away. The second was about 50 yards out and the third around 20 yards out. The fourth round landed within 10-15 feet of where they were standing. Sean reports that he was pelted with rocks, saw stars and bright light, and may have been unconcious for a brief time. He was not wearing protective gear.
Sean says that following the blast he was dizzy, had a headache, marked hearing loss, had light sensitivity, and his night vision was significantly decreased. These symptoms did not improve over time.
There were also many occasions where mortars and rockets were fired into the ASP (ammunition supply point). He tells of many nights when he wouldn't hear the blast or siren, but would wake up on the floor of his hut having been thrown from his bunk, or rolling for cover.
Another duty of the ammunition inspectors was to clean out vehicles in the "boneyard." This is the place on base where all the broken down or exploded vehicles are parked. Each vehicle needed to be throughly inspected for ammunition to be destroyed. These vehicles were not cleaned out before they came into the boneyard. Sean says he is haunted by images of body parts and blood that he encountered while rummaging through the vehicles.
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