Tuesday, April 21, 2009

The Kansas City VA

Since we live in a small community, most of Allen's care has been at the VA in Kansas City, Missouri.  The doctor and nurse case manager from the CBWTU really wanted him to get his psychiatric care at a VA and the one in KC has a good program for this.  There is another VA that is closer to us than Kansas City, but we had not had good experiences there in the past.  Actually, Allen refused to be seen at that particular VA.  

The care we have received here has been outstanding.  We both are very happy with his psychiatrist and his counselor.  We have developed very strong relationships with these two men.  They have both done an outstanding job with his treatment.  They always make sure we are completely involved in his treatment plan and they never make us feel rushed.  It is so amazing that in today's world, we have found medical providers who make you feel like you matter to them! 

 We see his counselor once a week, religiously.  Even if Allen has a bad headache or doesn't feel like going anywhere, we do not miss this appointment.  Jeremy is incredible.  I attend each of these visits with Allen, although I have offered to wait in the waiting room.  Allen really wants me involved in these sessions, and feels that he doesn't have anything to hid from me.  So, I've been to each and every one.  The nice thing is, we have been able to deal with anything that comes up through each week.  Jeremy's philosophy is that if it has anything at all to do with Allen we can talk about it.  We have developed a great trust and respect for Jeremy and both of us look forward to this appointment each week.  Jeremy has helped us deal with all aspects of PTSD through education and awareness.  We have also dealt with other issues that all end up relating back to the PTSD or TBI in one way or another.  We talk about parenting issues, marriage, family, friends, life, everything!  He has made a huge difference in our life and our road to recovery.  He is truly one of our many blessings!

Dr. DeMark is Allen's psychiatrist.  He too is awesome.  He mostly oversees the work we do with Jeremy and does medication management.  We feel that he truly cares about us and our future.  He has always been willing and open to ideas we have in regards to Allen's medications and care.  We are thankful to have him on our team!

While the VA is quite a drive for us, much of Allen's care has ended up being provided through them.  We have also seen an occupational therapist there to help with some cognitive issues.  Kristin was also a wonderful provider.  Allen was already seeing a speech therapist for this same issue here in our own community so we didn't work with Kristin for very long.  However, she is wonderful and does an outstanding job for our veterans.

One doctor that we saw here wasn't our best experience.  I'm not going to mention a name or specialty because I do not want to put that out there out of respect for the doctor.  However, I do feel our experience with this doctor is an important part of our journey.   During our first appointment, this doctor was asking Allen several questions regarding his symptoms for his brain injury.  Many of these types of questions, he doesn't have the answer for.  So, he always refers them to me.  They ask things like what he does during his seizures.  Allen has no memory from these seizure periods so he refers them to me.  This particular doctor was not interested in anything I had to say.  I was actually politely asked to be quiet that my in put was not important.  Neither one of us were happy with this experience as I often know many of the answers that he does not.  Thankfully, this is the only time we have had this happen to us.

Another department Allen sees regularly is neurology.  They monitor him for his migraines and seizures.  They really do not have an answer as to why he is still suffering so often and severely from these, but they do their best to manage them with medication.  Sadly, migraines seem to be a signature injury from this war and are very difficult to manage and prevent. 

One of the best parts of the VA system for us is that we have a whole team of people working for us in the OIF/OEF office.  The KCVA has an entire staff devoted to just OIF/OEF veterans.  The people in this office are awesome!!  They always have an answer and if they don't they can find it.  Terri, the nurse case manager in this office has been a rock for us.  These people show great compassion and understanding.  

Overall, our care at the VA has been better than the care we received at Walter Reed as an outpatient.  After all the bad things you hear about the VA, we are very thankful to have the providers we have.  We have been extremely happy we have this VA to provide Allen with his care.  

Even Now......Gina

Monday, April 20, 2009

Allen Before

Lately, I've been asked many times what Allen was like before his injury. Often, I struggle to come up with words that describe how he used to be. So, I figured I should do an entire entry on this topic. I'm going to start this blog entry with a picture of Allen and I from his welcome home ceremony, November 2006. This picture was taken right after the welcome home ceremony for his first deployment to Iraq with the 2/137 INF. When this was snapped, we had literally just found each other inside the ceremony and then all walked outside. It was such an awesome day. He had been deployed for 15 months and it was so wonderful being reunited after such a long, stressful time. We were all ecstatic!

I love this picture of us. I recently found it while looking through some pictures for a project I will write about later. It really shows his personality. Allen was the life of the party. He was silly and playful most of the time. You never knew when you were going to be attacked by the tickle monster or shot with some water, even inside the house. It was almost like having another kid!! Many times I was getting on to all of them, not just the kids!

Allen was also very kind and compassionate. If anyone needed a hand for anything, Allen would step up to the plate. A couple of our neighbors are single moms and often called on him for help with their car or around their house and yards. He loved helping others out. It made him feel good to be able to do something nice for people. I think it also gave him a sense of accomplishment.

Another side of Allen was his calmness. He never really worried about much of anything. He was so laid back and never had a harsh word for anyone. I'm not sure he ever even raised his voice at anyone. Even when he was stressed out, he always had the ability to keep his cool and talk things out with people. He was amazing this way. Something I always wish I had been able to do. He was never quick tempered or snippy. It was part of what I loved best about him!

The bond Allen had with our kids was unbelievable. Our youngest son Dreyson and him were almost connected constantly. I think I was more of a babysitter. The only time I had to do anything for him was when his daddy was at work. He lived for taking care of Dreyson. He loved carrying him around in his back pack doing his thing. I think part of this was because he has always tried to take care of me and to make life as easy for me as possible. He always put us first, before anything else. As long as we were happy, he was happy. He never asked for anything other than our happiness. He coached Makale's basketball team and would play anything with Makale. It didn't matter what else he had going on, he would stop to play with the boys.

While much of this has changed in Allen, I want to make it clear that we all still love him, even now. We make sure we tell him this regularly. The goal for all of us is not to get back to what used to be, but instead, to make the most out of what is, at any given moment.

Even Now......Gina

CBHCO Arkansas

After leaving Walter Reed in March 2008, we flew to Little Rock, Arkansas to be in processed for the CBHCO, which has since been renamed the CBWTU-AR.  Essentially this is a program developed by the army, mostly for injured National Guard members.  I think there are eight or nine of these throughout the United States.  They allow injured service members to move home to receive their care in their own community.  

  The injured service member remains part of a medical hold unit, (the CBWTU), and has a chain of command.  Since the CBWTU may be in another state, accountability is kept by phone and by having the soldier report to a local armory or other government facility.  Allen reports to the armory everyday that he does not have medical appointments.  The normal duty day for this type of program is eight hours a day.  However, due to Allen's condition, he is required to report for four hours each day, unless he is attending a medical appointment.  

This program does have very strict requirements that must be met in order to remain in the program.  If a wounded warrior is not complacent, they will be sent back to a main treatment center where they will have to live until they are finished.  One of the requirements for Allen to come to this program was that I was available to him 24/7.  Since he is not allowed to drive, I have to be available to drive him to all of his medical appointments.  I also have to be with him in case of emergency situations.  He often has migraines that require additional trips to the hospital.  He also still has many flash backs and periods of disassociation.  When these occur, it is essential that I, or someone else familiar with these episodes, are near so that he is not alone.  While I know many of his triggers, there are still some things that happen totally unexpectedly that send him back to Iraq.  Another requirement for him to remain in this program is that he attends weekly psych appointments.  We do this at the Kansas City VA.  

Our flight arrived in Little Rock on Sunday afternoon and we were met by one of the guys from the CBWTU.  He took us back to our room, (which was not the greatest), and gave us brief instructions on where to report the next morning.  Our room was in a cinder block building with someone's old bedroom furniture.  It's not that it was bad, it just wasn't even remotely similar to a hotel or anything else I'm used to.  It also wasn't the cleanest place in the world.  There were actually left over french fries under the desk!!

The next morning we reported to the building right behind our room.  For the next four days we would be reporting here each day in order to get in processed.  Each day was filled with meetings, doctor appointments, and paperwork.  It was fine, but there was information overload.  Thankfully, much of this, I had heard before while at Walter Reed.  We also met Allen's chain of command, which has since changed a couple of times!  Everyone was very nice though and it was nice to be able to have a face for the people we would be dealing with on a daily basis for the next who knew how long.  (Currently, it has been 13 months and still counting).  

On Friday of this week, we flew home to Kansas.  It was so nice to be home and to know we would be home for awhile without having to leave again.  We finally felt like we would be able to get into some type of a routine which I had greatly missed.  Having a routine is critical for me.  So, I couldn't wait to get back into a normal one.  Our kids were more than thrilled to have us home, although they too had to get used to living with Mom and Dad instead of Grandma and Grandpa, and Aunt Chris.  Of course, we don't quite have the same rules as grandparents and aunts!!

Currently, Allen is still a part of this same unit.  We had serious reservations about going into this program at first.  While at Walter Reed, I was paid a per diem for being his caregiver.  However, this special pay is not available for CBWTUs.  Since I am required to be available to him constantly, this is one of the unfair parts of leaving the major treatment facility.  However, we really needed to get home to our kids and our own support system.  We were also concerned about the medical care he would be giving up by leaving such a world renowned facility like Walter Reed.  But, we decided that we really needed to try it for the sake of our kids.  We are extremely happy that we did.  In many cases, we have received better care than we did while being treated at WRAMC.  I have decided that is because WRAMC receives the worst of the worst.  So, many times, the other wounded warriors get pushed down between the cracks.  There is also a lot of discrimination against the guys with the invisible wounds, whether they are physical or mental.  So, for us, coming home to the CBWTU was a wonderful choice.  Overall we have been pleased with his care although there have been some things that haven't been addressed like we would like.  But, that is just life.  No system is perfect and you have to learn to get the most out of each opportunity instead of becoming bitter and negative.  

My advice to anyone fighting the system taking care of a wounded warrior, don't give up.  Keep fighting the fight, taking care of your warrior to the best of your ability.  And whatever you do, don't let the negatives out weigh the positives.  After all, you are the lucky one, you still have your soldier to fight for.  May God bless you all and keep you healthy and let you see the positives.

Even Now.......Gina


Saturday, April 4, 2009

Colorado Technical University Online

While our time at Walter Reed was filled with both good and bad memories, many good things did come out of it. One of these was a wonderful opportunity for a scholarship to Colorado Technical University Online. While Allen was an outpatient at Walter Reed and we were staying at the Mologne House, CTUO had a table set up in the lobby of the Mologne House. One day while we were heading in to eat, a man sitting at the table invited us over to talk to him. He was a representative of CTUO and was there helping wounded servicemembers apply for a wounded warrior scholarship to Colorado Technical University. They were awarding 25, full ride scholarships to wounded warriors and were inviting Allen to apply. Along with the scholarship came an apple laptop and books. The entire degree would be cost free to the recipient.

Allen decided that it would be a great opportunity to apply. He had always wanted to go back to school, and with his future so undecided at this point, he felt it was a great opportunity. Over the next few days, we worked on the application, which included an essay over why he should get the scholarship. He worked really hard on the application and the essay, and I helped him polish it up. His essay was based on the Soldier's Creed and turned out great. I really hoped that he would be chosen.

About a month after turning in the application, he was contacted by CTU. He had indeed been chosen as a scholarship recipient and classes would start in April 2008. They were going to have an awards banquet at Walter Reed for all of the recipients. We were really excited. We knew that going back to school would be a struggle for him with his brain injury, but also the doors it could open for our future.

The banquet ended up being right before we left Walter Reed to go home. So, we were able to attend and ask questions to learn more about the program. Allen received a full ride scholarship in an associate's degree in IT. All of the classes are online and it is set up to be an accelerated program. The classes are taken two at a time in five and half week sessions. A mac book was being provided by Apple to each of the recipients to make sure they had all they needed to be successful. Allen was among the first group granted this awesome scholarship and the university was hoping to continue offering more.

Currently, Allen is working on his associates degree in IT. It has been a real challenge for him to keep up with his studies and his health. Migraines keep him down a lot and makes it a difficult task to get assignments finished and submitted on time. His professors have been wonderful and very flexible with him. He has really enjoyed it so far. I have to help keep him on track and do a lot of proofreading. But, it is worth it. There have been several sessions though, that I really wondered if it was just too much. He gets so many feelings of accomplishment though out of it and has been able to remain on the Dean's list. He has had to only take one class a session in order to keep up, but the school has been incredibly flexible. It will just take him longer to complete his degree. However, he figures he would rather do it right than worry about the speed.

My advice to anyone who was wounded or a caregiver of someone who was wounded, always explore your possibilities and what is available to you. You sacrificed so much, and there are many organizations out there who want help. Let them help you. If school is what you think is right for you, do your homework. Look around at many programs to decide what is right for you and if there are any scholarships available. Talk to other wounded warriors and their caregivers. Often, we are each other's own best resource.

And, most importantly, remember, you are not alone. Other's are out there even if you do not personally know anyone else. We are out there.

Even Now.......Gina