Monday, March 31, 2008

Letter From a Son to His Father

This letter was written by the 16 year-old son of a soldier who deployed in June 2004, re-deployed with our unit and returned home in October 2006:

Many nights I would lie awake, not being able to sleep, not knowing if you were safe. My heart would slowly sink each time someone mentioned your name, for I knew you were not here.

I often stared at your picture, just wishing to be able to feel your warming touch, or hear your voice to lift me up from this state I seem to have been in for so long.

The news of your arrival lifted my heart higher than it has ever been for I knew I would soon be able to hold you in my arms after many months of struggling through life.

I say to myself how much easier everything will be now that you're home. I no longer have to lie awake at night in fear, not knowing where you are.

I see you slowly walk off the plane and look around, trying to find me. I cannot help but run up to you and embrace your warmth that has been missing from my life for so long.

For me, my superstars are not athletes, but the men and women that give up everything they have so others are safe. So I say, "thank you" to all the men and women of the military, and hope you can really see how much you are loved.

The Un-Homecoming

In mid-October 2006 our FRG planned and hosted a fantastic homecoming reception for our troops. Except for three of them. Sean and two others were in med hold and could not come home with the rest of the unit. For me, it was an un-homecoming event.

As assistant leader, I worked with my six dear friends from the FRG, my army family, to prepare for the festivities. I did not want to be there, and I am certain I did not make it easy for them. How could I be excited for them when my family would be left out on such a joyous occasion? How desperately I wished that Sean was coming home. My kids felt it too, although they tried not to show it. Everyone did a nose-dive that week.

We had to arrange for the speakers, refreshments, posters, parade route, busses to and from the airport, reception afterwards, and coordinate the calling of every family to let them know when and where their soldier would arrive. Many cross-levelled soldiers who were added to our unit to bring it to capacity were from other states and were flown directly home, so there was much flight information to communicate.

Military security prevented us from giving family members an exact time, so we had to tell them an approximate time to be on-hand to board the busses to the airport. Space on the busses was limited, so they had to choose who would be at the airport, and who would wait at the Reserve Center. We had many tense, and even angry family members because we weren't being specific enough, or we were causing family problems by not letting mom, dad, brother, sister, wife, Uncle Larry and the neighbor across the street all ride the bus. We were very unpopular.

And to top it off, Sean was not coming home. Nor did we have an ETA on his return.

I wanted to be there for these families as I had throughout the deployment. I had gotten to know the families from my phone tree quite well and was looking forward to seeing them and celebrating with them. But I didn't want to celebrate. Several times I backed out, but my friends convinced me to be there, that these soldiers all deserved a welcome home. Which in the end is what won me over.

I was there, but I was not happy. I smiled, I worked, I hugged soldiers as they came off the plane. In fact, I made it my mission to hug each soldier who, for whatever reason, did not have a family member present.

I had been planning with a set of parents from Las Vegas to get their son in the first seat of the first bus so that he could see them along the parade route. He didn't know they would be there. As we approached he said, "That guy looks like my dad. I think that is my dad!" and he got tears in his eyes.

The mayor spoke, a touching letter from a son to his father was read, and families hugged, laughed, and cried. People weren't quite sure what to say to me. Some asked about Sean. Some thanked me for all I had done. Some didn't say anything at all. Somehow, I made it through.

When it was over, families and their soldiers went home together. I went home alone.

Sunday, March 30, 2008

You Have Got to be Kidding

Sean was thrilled to have met with Dr. R. Then they lowered the boom. His new doctor on base, Dr. A, would be leaving for three weeks (Sean met him one time) and therefore Sean would be seeing Dr. X.

Wait a minute. . . I thought he was out of the picture. Someone was obviously not telling the truth.

A Second Opinion

Sean was finally able to be examined by a bona-fide GI specialist. Dr. R was concerned about the number of medications Sean had been taking over a seven month period with no relief, or explanation for persistent symptoms.

Sean had a colonoscopy, a small-bowel follow through, and a capsule endoscopy during month two. When all three tests came back with no indication of GI problems or even inflamation, Dr. R did a CT scan which also came back normal.

Dr. R concluded that there was not a problem that he could diagnose, but he would treat to the best of his abilities. He advised that Sean should be under a doctor's care with an infectious disease doctor as the symptoms were not responsive to the prescribed antibiotics.

Why Not Come Home?

People asked all along, "Why doesn't Sean just come home?" Well, it was not that easy. First, he was put on medical hold which means he had to stay until he was well enough to come home and do his normal military duties.

Second, Sean was not well enough to come home and go back to work. If they released him from med hold, then his military pay stopped.

Third, military medical can be tricky. If we pursued outside medical advice, the military insurance could write us off.

Finally, to enroll in and doctor with the Veteran's Administration (VA) Healthcare System meant a 2 1/2 hour drive to see a provider as our town only has a PA, not a doctor.

We were between the proverbial rock and hard place when it came to having the latitude to make other decisions. This is why I was pushing for a move to a different facility or to WRAMC.

I had made contact with the surgeon general's office for our command. They were not sure that the c-diff was all there was to cause concern. There was talk of parasites, and infectious diseases. They were pushing for a transfer to a facility with a GI specialist and an infectious disease specialist. Since we didn't know exactly what was causing this infection, we could not be sure that we could find the proper treatment locally.

There were times when Sean wanted to tell Dr. X he was feeling much better and ready to come home. But we just could not take that chance.

Saturday, March 29, 2008

Are You Really Here?

Pinch me, I must be dreaming. And if I'm dreaming, I don't want to wake up.

I spent four glorious days with Sean on base. It was wonderful! We watched movies, shopped at the local Wal-mart and PX. Slept late. Did nothing but hang out.

Sean had a nice room on base, not big, but decent. There was a town on each side of the base about a 10 minute drive to go and do a little shopping or get a meal.

Sean had lost about 45 pounds. His face was hollowed out, as was his stomach. He was walking skin and bones. He moved slowly. Most of the time he slept. I watched him sleep. I checked to make sure he had a pulse and was breathing. He seemed to have pain no matter what time of day it was. It was hard to see him in that shape. I could put my arms around his waist and touch my hands to my elbows on the opposite sides.

As happy as I was to be with him, I also knew it would be over too soon. I was due back at work on Monday. On Sunday I called my principal and told him that I just could not leave. He arranged for a sub again on Monday so that I could stay one more night.

When it was time to leave on Monday, we were both very somber. I dropped him off in the hospital parking lot and tried to put on a brave face. He did the same. Of all the times we had said goodbye, this was the worst. The absolute most horrible of goodbyes. Sean was tired, sick, and depressed and I let him out of the van and I DROVE AWAY.

I drove away and left him behind. Somewhere that he did not want to be. A place that was not treating him well. I cried most of the way home.

I still cannot find the words to describe the ache in my chest that I was leaving him behind. It was one thing to put him on a plane, or see him drive away. But this time, I left him there. What an awful, lonely day that was for us.

Thursday, March 27, 2008

Road Trip

At the end of September 2006, I was finally able to go visit Sean! I made arrangements for the kids to stay with a friend, and got a substitute for school. I was excited, nervous, anxious, happy, scared, all in one.

I left late morning, after having a near-nervous breakdown over preparations for the kids, packing, etc. The day was overcast, but otherwise good driving weather. I was very stressed about driving by myself, worried about what time I would arrive, wondering if I could find the base in the dark, and (shocking) missing having the kids in the van complaining about the ride.

One hour down the road and I stopped for a snack. When I came back into the parking lot something came over me and I thought, "I should check my tires." This is not something I would normally think to do. But, I had a feeling. . . that feeling turned to despair when I saw my flat rear-passenger tire. I drove to the air hose thinking, "Maybe it's just low," even though I could clearly see that was not the case. I was in full panic mode. I was at a truck stop, but there was not a repair shop nearby. I didn't even know for sure where my donut spare tire was (I know, but I've never needed to know before). I still had 9 hours on this trip, and now I was thinking maybe I couldn't even go.

I went back into the truck stop and asked the clerk about a tow and/or repair shop. She gave me a number but said, "It'll probably be a couple hours before he gets here." That's comforting.

About this time, Sean called to say, "How far away are you? When will you be here?" and I lost it. I lit into him about how I was trying to get there but couldn't have him calling me every five minutes to see where I was. Poor Sean. He had only called one time that morning to see when I was leaving. A little misplaced anger there.

Fortunately, a nice truck driver offered to put on my spare so I could drive 30 miles down the interstate to the next town with a Super Wal-mart and a tire center. God bless that man!! He didn't even laugh when I said I wasn't sure where the spare and/or jack were. At least he didn't laugh outwardly. I said a few prayers of blessing for him and his family and 30 minutes after I stopped, I was back on the road.

I spent the next 30 miles with visions of my tiny spare tire suddenly jumping off my van and sending me into the ditch. Things like that can happen, you know.

I called and apologized to Sean while I spent an hour browsing in Wal-mart waiting for my new tire. I felt so defeated. I could have laid down in the aisle and bawled. Sean told me if I didn't feel up to the trip I could go back home. That was all I needed to hear. Go home? Are you kidding me? And just who are you to tell me to go home? The trip was on!

Back on the road and things were going well. Then it got dark. The good news is, I couldn't see what must have been ominous storm clouds. But it wasn't long before the radio stations started handing out tornado and thunderstorm warnings about 20 minutes behind me all the way there. It rained, poured, thunder and lightning, the whole show. I changed the radio station with every town to hear the latest update. The worst of the storm stayed about 20 minutes behind me. A smart person might have stopped, but I was an exhausted, irrational woman on her way to see her husband after six months. What would you do?

I arrived at base around midnight. I was feeling so very proud of myself for not getting lost! I pulled up and handed my registration, ID, insurance papers to the guard. I was asked to pull to the side and wait. What the hell? Turns out my license was expired!! I almost died! So they had to call the building where Sean was, have him get a ride to the gate, and drive the van onto post. Our reunion was a hug in the parking lot at the gate surrounded by MPs. They were very nice about it and told me who to call to get an extension until I made it back to SD.

Month One Comes to an End

One month came to a close with no answers. Pain persisted despite soft/liquid diet. Medicated for pain and nausea, but no further investigation for a cause. Dr. X told Sean, "you're getting better, wait and see."

Ms. S, Sean's case manager, talked to LT D, hospital director, and arranged at appointment with a civilian GI specialist in a city an hour away.

COL S, the hospital commander, responded to the congressional inquiries with a letter that basically said she was satisfied with the care her facility was providing for Sean. That's a relief! As long as she was satisfied with his care. . .

Sean's mental health evaluation was unremarkable. The psychologist said, "you should be agitated due to the lack of care you are receiving."

I received a phone call from LT. D. She wanted to know exactly what our concerns were for Sean and what they could do to improve their care. Finally! Someone who would listen, who wanted to help! I reviewed the past month with her and expressed our concerns about Dr. X who continually said, "just take your meds," the meeting where Sean was attacked, threats to withhold treatment if congresssional complaints continued, the whole kit and kaboodle. Little did I know that she was the right-hand-woman to COL S.

LT. D contacted me the following day and informed me that Dr. X would no longer be seeing patients due to administrative restructuring, not due to any concerns regarding quality of care. She said that a second opinion by an outside GI doctor was warranted and had been arranged.

She also told me how lucky Sean was to be at their facility where he could receive personal care (huh?) and not at a large facility like WRAMC where patients stay in hotels and shuttle back and forth to the hospital. A large hospital like that could not possibly give Sean any individual attention.

Although I was not convinced he was lucky to be where he was, I celebrated the victory that Dr. X was gone and a second opinion outside of the military would be arranged. It was a day for dancing and singing!

And then I heard that LT. D.talked to Sean and told him that he needed to quit whining. He had gotten his way, so now he needed to be quiet.

I should have known better.

Monday, March 24, 2008

Just Take Your Meds

Week three began with an appointment at Dr. X's office. Sean asked again if he could see a GI doctor. Dizziness and nausea had gotten worse. Dr. X agreed to set up an appointment with Dr. D. I'm began to wonder if this Dr. D was even a real person, or a figment of Dr. X's imagination.

Dr. X said he did not want to let this infection linger and would consider sending him elsewhere if necessary. In the meantime, "take your meds and you will be fine."

On day 15 Dr. X met with Sean. He could find no explanation for the nausea and dizziness. "Just take your phenergan (for nausea)."

"Your diarrhea is improving, so you must be getting better."

"Just keep taking your meds."

Day 16 and Sean met with Dr. X again to discuss a possible transfer to Brooke Army Medical Center (BAMC). After talking to a GI doctor at BAMC, Dr. X said they would not accept his case as it was not serious enough.

Sean was tested for the c-diff infection and this time the test came back negative. Thank God! At last some good news.

The diarrhea, nausea, and dizziness persisted. Dr. X had another medication in mind to clean out the intestinal tract, but the pharmacy--are you ready for this--could not supply it as it was out of stock and they would need to order it.

Dr. X also decided that since the test for infection was negative, he did not need to see GI Dr. D as there was nothing more that he would do. Sean was visibly upset that once again the GI appointment was cancelled. Dr. X told Sean, "You are the most agitated man I have ever met."

Now I ask you, who among us after 13 months of deployment, 5 1/2 months of illness, coming out of a war zone, and being treated poorly would not be agitated?

Day 22 Dr. X discontinued antibiotic treatment as the infection was cleared up, and the antibiotics were not helping with the current symptoms. Sean was told, "You're doing well. Just take your meds and you'll be going home soon." Really? Diarrhea, nausea, dizziness, abdominal pain so bad that all he can do is lay down is "doing well?"

Sean put in a request with Ms. S for an outside second opinion.

Top-Quality Medical Care

Day 11. I'm trembling with adrenaline as I reread my notes from this most horrible day.

I'm going to give Tonya at Senator Tim Johnson's office a shout out here. This wonderful woman talked me off a cliff on day 11. Way above and beyond the call of duty on her part. I can't even tell you how amazing she is. She talked to me almost daily for a while. If I didn't call with an update, she would call me. She would call and say, "I'm waiting for a call back from the Pentagon." A little awe-inspiring. I had her on speed dial and she never once ever made me feel like a raging lunatic (which I might have been), or a complainer, or a bother. She treated me with absolute kindness and concern for Sean's well-being.

Livid. Seething. Raging. That is how I would describe my emotions upon hearing the events of day 11.

Sean was woken the morning by his Platoon Sergeant for an impromtu meeting with MAJ Z, Dr. X, Ms. S (a new case manager), and another MAJ whose purpose I do not know.

MAJ Z asked Sean if he would agree to let Dr. X treat him. She said the hospital was doing the best it could and they were providing top-quality medical care. As this illness was serious, it could take a long time to treat. He may need long-term antibiotic treatment. The hospital and Dr. X were willing to go forward with treatment if no more complaints were filed.

Did I hear that right? Treatment could go forward if no more complaints were filed? Does that sound like a threat to withhold treatment should we exercise our right to inquire about the care he is receiving?

Sean was advised to track his fluids and stools himself. He could purchase appropriate tools for measuring such things at the pharmacy and keep a log book. He should make subtle changes to his diet and track those as well. Never mind that the man was on a diet of ensure, gingerale, and crackers. What should he change?

MAJ Z said that no further lab tests or stool samples were needed. If he had fewer stools, then the infection was getting better.

MAJ Z asked why congressional complaints were launched and why he felt the placement was inappropriate. He had not even been on base for two weeks and already he was complaining about their level of care and making them look bad. Furthermore, they had made arrangements to get him necessary medications, and had scheduled an evaluation with a GI specialist, Dr. D. Scheduled, yes, and CANCELLED!

Sean was told that he is not a doctor, and therefore does not know about his medical needs or treatment (this comment from the doctor who had to look up the condition and said he couldn't treat it). He was told that he was the most agitated patient they had ever met. He was ordered to have a mental health evaluation because he should have been getting better, but was still complaining of symptoms. It was suggested that if his wife came down and spent a few days to help, "relive your tension," he would get better. He was told directly, "If you stop complaining, we will start treating you."

When the meeting was adjourned, MAJ Z gave his case file to Ms. S and told her, "He's all yours. You had better call him everyday or he will complain."

Sean asked Dr. X after the meeting, "Is it normal to have this abdominal pain, take percoset daily and have so much nausea?" Dr. X said, "No, it's not normal, but if the diarrhea goes away, then you will be fine."

Sean spent the night in his room throwing up.

Week Two--Hell Week Begins

Dr. X ordered a probiotic treatment. Par for the course, the pharmacy on post could not fill this prescription as the stock on hand was outdated. Sean travelled to the next town once again to get his prescription. The probiotic caused increased pain and was discontinued after three days.

Sean went to the scheduled meeting with Mr. L, but MAJ Z and COL Y were not in attendance. Mr. L told Sean that he had spoken with COL Y on the phone and she decided they would continue the course of treatment with Dr. X. The request for transfer was denied in order to exhaust all their resources first. Mr. L also told Sean, "I have spoken with your congressional contacts, so there is no need for you to call them again." Um. . . excuse me? Are you seriously telling me that I am not to call my congressional contacts?

So I called my contacts and informed them know that Mr. L had tried to ease my workload by making the calls for me. Tattle-tale, I know. Needless to say, these contacts were appalled that he so brazenly told Sean not to make further calls.

I also learned that when Mr. L returned these calls, he provided false information such as a new antibiotic was being started that day, and although the pharmacy did not have it in stock, they made special arrangements to have it delivered to Sean. Remember the taxi rides to the next town? What accomodations!

Day Five--Things Are Looking Up

Sean met with Mr. L who was in agreement with our concerns. He submitted a request for a transfer to a facility with an infection control doctor and/or a gastroenterologist. He arranged a meeting with Dr. X, MAJ Z, a case manager, and a COL Y, the hospital director. The meeting was set for the following week as it was now Labor Day weekend and a four-day military holiday.

Day Three--We're Not Gonna Take It

Day three and things were changing rapidly. Dr. X brought Sean into his office and told him that he had researched c-diff and could indeed treat him. He said further tests for the presence of infection were unnecessary as the infection is considered gone when symptoms subside. The doctor in Germany had said three negative tests were needed to confirm the absence of c-diff infection.

He switched from flagyl to vancomycin for antibiotic treatment. According to his research, the new antibiotic would clear the infection within 10 days and he would be home by Labor Day.

Dr. X did call the CDC and they recommended confinement to quarters as c-diff is infectious. Sean would stay in his room with the exception of making the 3/4 mile hike to the hospital three times a day and attending formation each morning. He was not to spend time in the medhold dayroom with other soldiers.

Dr. X also cancelled the appointment with Dr. D because he felt (with his vast knowledge of the infection) that the new antibiotic would clear it up. Sean had to travel to the next town by taxi to pick up the new medications because the pharmacy on base did not carry it in stock. As an added bonus, since he was not given the prescription through the post pharmacy, he had to call and argue with TriCare (military insurance) to get them to authorize the prescription and pay the cost.

I decided that instead of taking a "wait and see" approach, I would be pro-active and get things moving quickly. I called the offices of our US Senators and Representative for South Dakota and asked each of them to make an inquiry regarding Sean's care and possible transfer to an actual medical facility.

Within an hour, I had the name and number of a patient representative on base and a meeting was arranged between Mr. L and Sean for the next day. One thing I have learned through this experience is that nothing makes things happen like a call to the Senator's office.

Sunday, March 23, 2008

Day Two--Very Reassuring

Day two started at 6:30 AM when my phone rang. The caller ID showed the incoming call was from the base hospital. Stomach in throat, heart racing, I answered the phone. "Hello?"

"Is SSG Johnson available?"

"No, who is calling?"

"This is Dr. X. I was trying to locate SSG Johnson."

"Um. . . I'm in South Dakota, he is on base in the medhold barracks."

"Oh, yes. I will try to find him there."

Ok, feeling extremely unsure of the situation now. Shouldn't the Dr. be able to find the patient?

Later that day Sean went in for a meeting with Dr. X. During this appointment Dr. X looked up c-diff on his computer. Sean sat there as he reviewed the information on the screen and then said, "I can't treat that." Good to know.

Dr. X arranged an appointment in town with Dr. D, a GI doctor, who agreed to perform a one-time evaluation and then make recommendations to Dr. X on how to treat. Very reassuring.

Sean was sent to the ER to reclaim his medications that the staff had "found" overnight.

I was greatly concerned that there was no monitoring of fluids, medications, stools, or food intake. No one was scheduled to check on him throughout the day. He was given narcotics for pain, while in a depressed emotional state and sent to a room to spend most of the day alone. Sean said if he didn't show up for formation in the morning, then someone would come to check on him.

I decided to locate the post chaplain and ask for some assitance. I visited with him, explained the situation, and asked him to please arrange for someone to check in with Sean periodically as he was sick, lonely, and depressed. The chaplain assured me that he would take care of it. No one ever came. Approximately two weeks later the chaplain made it up to Sean's room to visit with him. He apologized for the delay, saying it was a big base and man-power was thin. Sean did like the chaplain and later made a few trips to his office and got some good reading material.

Don't Mess With My Wife

Day 1 did not leave a good impression with me for obvious reasons. I couldn't sleep last night after posting, it affects me so deeply still. We joke about it, tell the story, but when I think about the way Sean, a three-time honorable veteran, was treated it makes me physically ill. He has stopped reading the blog now because he does not want to relive this stage in his life. Can't say I blame him.

I want to take a moment to describe my mental state at this time. It was the end of August 2006. My husband had been away from home for 13 months. I had not seen him for five months, but had spent those five months hearing every few days about how sick he was. I knew he had dropped at least 40 pounds, but had not seen him with my own eyes or touched him with my own hands. I mentioned before that my husband does not get sick, does not take sick days, and certainly does not complain (that is my job in the family--one I do well, I might add). So when I hear that he is sick, in the bathroom 10+ times a day, losing weight, not eating, doubled over with pain at times it nearly drove me insane!

I have a child who does not, under any circumstances want to go to school and rebels constantly. Pierced lip, ears, breaking curfew, skipping school, fighting at home, you name it. This teenager had some serious separation anxiety issues and pushes others away just to see who will return and still be there. I have a child who was transitioning to a life in a new town with us as the full-time family. There had been a hard road for this one for such a short life. We were adjusting to each other and dealing with residual issues as well. I have a child in the middle feeling left out because one sibling is acting out and one is having difficulty with the move and middle child is unhappy with the changes. The middle child is used to being the youngest child. The youngest child was formerly the oldest child in that household. The oldest child was acting out. And while I am not a single parent (praise to those of you who are), I was very much on my own.

I was starting a new school year with a class of 26 students. Typically, I get the few students who are more challenging because I have a background in special education and previously worked with students who were emotionally and behaviorally disturbed. 2006 was no exception.

The Family Readiness Group, of which I am the assistant leader, was planning for an October homecoming for the unit. I didn't know when my husband would be coming home. I attended the meetings and helped with the preparations, but my heart ached at the thought of the soldiers coming back and mine not being one of them.

My husband just arrived in the United States, and I could not see him, comfort him, or care for him. I remember Sean calling home that first day and I think he was in tears (not that he would admit it) as he described how incredibly alone he was feeling. I sat down and bawled after that conversation. I did not sleep that night. All I could do was lay there and think, "How am I going to get him out of there?" I was feeling overwhelmed, exhausted, and in no mood to mess around with stupid people.

I don't mean to say that everyone Sean came into contact with was stupid, but as you read, you may be able to pick out a select few.

The Finest (Lack) of Care the Military has to Offer

585 miles from home. 10 hours away. Sean was back on US soil and although I couldn't be with him, I knew that he would be getting the best care possible and would soon be returning home to us. After 5 months of battling illness, Sean would be recovering and on his way home.

This could not have been farther from the truth.

Disclaimer: The military does offer top-quality care to its soldiers. However, this was not the experience we had at this particular military facility. I wish to tell our story which involves lack of care and a fight to get the medical treatment my husband deserved. Please do not take this as a generalization of all military facilties or military healthcare.

Sean arrived at his destination on August 27th, 2006. I had contacted the hosptital to see if they could let me know when he arrived. Of course with privacy policies, they could not. They did offer to give my number to the paramedics on the ambulance so that if Sean asked them to contact me, they could.

The ambulance picked him up at the local airport and transported him to the emergency room on base. Two doctors met with him in the ER. The first doctor wanted to admit him to the hospital, give him some IV fluids, and review his records. The second doctor, who will be known as Dr. X, discharged him and sent him to the medical holdover barracks.

Sean had been told in Germany that he would be seeing a GI specialist to treat his illness. Dr. X told him there was not a GI specialist at this facility. He reported that records from Germany said nothing about the c-diff infection, rather had him categorized as irritable bowel syndrome (IBS). Dr. X said there was no need for continued fluids, medication, or isolation (he had been in isolation in Germany due to the nature of the c-diff infection). He told Sean, "You're fine."

The ER staff took his medications for pain and nausea for inventory and later refused to return them. Sean was told they had "no record" of any pain medications for him.

And so begins the fight. Sean will tell you, "Don't mess with my wife."

And Now, Back to Germany

By the end of July Sean was seeing the doctor at Camp Anaconda again and trying a new medication for pain. He was dehydrated and the pain made it unbearable to eat. He had been very tired and was working frantically to get the unit ready for demobilization.

The pain, vomiting, nausea, and diarrhea were back with a vengeance. He was not able to eat or sleep. When he was not working, he was in the porta-john. The doctor said he may or may not get better if he goes back to Germany but that he could not stay in Iraq with this pain. The commander and doctor decided to send Sean to Germany and then on to WRAMC in the states.

Sean writes, "it is a bittersweet departure. . . sad, happy, scared. . . I don't know how this will affect my unit, my status within the unit, my career in the military, or my future. . . " Prophetic words indeed! We had no idea how this would affect his future.

The orders were set for Sean to medevac out on August 4th, but thanks to a COL being on base, it was postponed for three days until August 7th. This particular COL suggested to the commander that Sean should not leave Iraq without being presented with his meritorious service award, complete with ceremony (mostly to honor the COL's presence). So his trip was postponed and on August 7th there was a ceremony to present Sean with his medal, minus the COL who decided to do something else instead. Nice.

Sean arrived at Landstuhl late in the day on the 7th of August 2006. Back to the barracks, wait for the bus, have multiple tests, wait for the bus. Two days later, Sean was diagnosed with clostridium dificile (c-diff) infection. His doctor began treating him with flagyl, an antibiotic that works by stopping the growth of bacteria and protozoa. The explaination for the infection was that upon discovering the salmonella infection Sean was treated with high-powered antibiotics. C-diff can occur when a person is taking large doses of antibiotics, so therefore, the c-diff developed due to the treatment for salmonella. And like the salmonella went undetected, so did the c-diff which should have shown up in previous tests performed at Landstuhl.

One week later, the doctor's decision was to continue the flagyl despite the lack of improvment in symptoms. Sean still tested positive for c-diff. At the end of his two-week stay, Sean's doctor decided to send him to the US for further treatment. Despite the recommedation from his commander to send him to WRAMC and previous conversations with the doctor regarding that possibility, Sean was instead slated to fly to the states via medical aircraft and be treated at a regional military facility.

On the 25th of August he left Germany for the last time and arrived at Andrews Airforce Base. I was overjoyed when he called me from America! At last, he was in the country and I could feel some degree of relief. I wanted to go meet him, drive, fly, run, whatever it took to get next to him. But saner minds prevailed. School was starting for three kids, one of whom was having attendance problems related to separation, and another who was just beginning her life in our household fulltime. We also did not know if Sean was contagious and I certainly had enough going on without bringing illness to the rest of us. So, we waited.

For those of you who think this has been a long and remarkable journey, you're right, but don't tune out now, for the story is far from over. There are hurdles coming that I could never have imagined. This now becomes a story of a wife who had to fight to get her husband medical care and get him back home.

Out of Iraq. . . and Back Again

On June 21, 2006 Sean was medevaced out of Iraq to Landstuhl Hospital on Ramstein Air Base in Germany. The flight was rough and Sean needed to be strapped down and was given pain medication. He had severe nausea and cramping.

The medical barracks are located on base and are approximately 25 miles from the hospital. Every morning soldiers board the bus and ride to the hospital for appointments, tests, and waiting. . . until the bus takes them back to the barracks at night.

Three days into his stay in Germany, Sean had ten different tests done with more on the way. He was assigned a primary care doctor and a case manager. A gastrointestinal doctor and an infectious disease doctor consulted on his case.

Sean says he felt overwhelming guilt for leaving his unit behind. He worried that he had not finished his mission. He wanted to go back and finish his duty, but did not have the strength.

The primary doctor told Sean there was a 14 day window in which they could treat him, or send him home to the states if they were not able to treat him. The consideration was to send him to the states for six months of treatment at Walter Reed Army Medical Center in Washington, DC. My husband wanted to know how he could get back to Iraq. He was told to wait for additional test results before they discussed that option.

Now my husband is in a foreign country, alone, on narcotics and barbituates, sick and exhausted, depressed, feeling guilty about leaving his unit, angry that he is sick, anxious about what will happen next, and he sits and waits for the bus. . .

After one week in Germany, the doctor decided to perform a colonoscopy and an endoscopy. The scopes aggravated the pain, and the doctors suspected IBS. Nothing else abnormal was noted.

Twelve days in Germany and Sean writes that he is on the mend. Hallelujah!! The pain is mostly gone and he is able to sleep better. He says he is not rushing things, but is hopeful. Music to a frantic wife's ears!

Sean spent the 4th of July in Germany and then returned to Camp Anaconda, Iraq. I don't know how to describe my feelings at this news. A. I was thrilled that the worst was over and he was feeling better. He was sounding like himself again and was optimistic that he would finish his mission and be home in a few months. B. My husband was going back into Iraq. Back to Iraq. Back. Not back to the states, but back there.

On July 10th Sean was released for regular duty. All tests came back negative. There was no explanation for his symptoms. The doctor said there was nothing more he could do, so Sean could go back to work.

Monday, March 17, 2008

Research

I have been doing a great deal of research these past few weeks and that has slowed down my posting more than I would like. However, I am learning about what is happening with my husband and within our family.

I have added links that I have found useful in my research. I especially like the article on Living with Military Fathers with Post Traumatic Stress Disorder (PTSD). I have not found any similar articles for explaining Traumatic Brain Injury (TBI) to children. I may have to write one myself. The Quick Guides to TBI and TBI/PTSD are also helpful for a snapshot of the conditions.

In addition to posting here, I am working on a comprehensive document for our family members to help them understand the conditions and how they affect our family. I plan to include that here when it is finished.

It is my intent to tell our story, but to also assist others in similar situations. We have said from the start that if we are virtual guinea pigs in the process, then let us be able to help others struggling to find answers as well. If there is information you would like, please contact me and I will try to fulfill your request.