Thursday, February 26, 2009

Out patient at Walter Reed

Up until the time we came back to Walter Reed, January 6, 2008, we didn't have a lot of complaints about the care Allen received.  Even now when asked about his care at Walter Reed he says he couldn't have asked for more while he was an in-patient.  Then, he gets to the part when we returned to Walter Reed for what we thought would only be a couple of weeks.  Little did we know it would turn into almost 3 months before we would make it back home.

The Hilton Hotel in Silver Spring, Maryland was our home for the first month of this time.  We could have stayed there the entire time but we fought to be moved to the Mologne House which is on the campus of Walter Reed.  We grew very tired of the shuttle that we had to rely on to get us back and forth.  The vehicle used was questionable.  One of the drivers always smelled of alcohol.  Several times we had to wait anywhere from 2-4 hours for the shuttle to come pick us up to take us back to the hotel and this was after several phone calls assuring us they were on the way.  Overall, it was much better for us to be on campus and not have to rely on a shuttle!

Upon our return, we had several appointments we had to make.  The first on the list was to meet with his nurse case manager who was in charge of transferring him into the community based healthcare organization which would allow him to receive his care at home.  Our first meeting went down the drain immediately.  We found out that Allen's case manager hadn't done anything on his case while we were away for the holidays.  (Something we quickly learned was that if you want your case to move along in this part of the system, you have to be your own advocate and make sure everyone is doing what they are supposed to be doing.)  Also, we were told that his case manager was going on leave to have surgery so we would be temporarily handled by another case manager.  We thought we were simply returning to DC to finish the paperwork up that would transfer him to this community program where he could live at home.   

The case manager that took over our case temporarily was awesome.  She was a psych nurse and we quickly fell in love with her.  She was great at her job and felt like family.  She started making progress on our case quickly, but also let us know that it was going to be several weeks in getting it all done.  Before our other case manager returned,  we requested to be switched to this new case manager.  We were both extremely disappointed that he had dropped the ball on our case which was keeping us from our kids that much longer.  This time was extremely frustrating for us which did not help Allen's mental recovery at all.   I started seeing some of the drastic signs and symptoms of the severe PTSD he continues to suffer from today.

One of these times happened in the bar area of the lobby of the Mologne house shortly after we returned to DC.  We were meeting Major General Bunting, Colonel Faulk (M.D.), and some other people he brought with him.  One of these other people has been one of the relationships we are so thankful for, Dr. Ike Nnawuchi, psychiatrist.  When we first sat down I noticed Allen was not really present.  He had a very strange look on his face and he was not there behind his eyes.  Shortly after we all sat down, Allen pushed back from the table and got on the floor searching the floor and under the tables.  (This was, by far, the worst I had seen at this point.  Thankfully, both doctors were there with us to witness it and to reassure me!)  This actually went on for quite a while, several minutes.  Finally, the trance like state, just kind of went away.  I have since learned that this is a form of his flashbacks and periods where he breaks from reality.  When these episodes happen, Allen has no warning they are coming on and no memory of them afterward.  They are very bizarre and hard to explain.  At first they were quite frightening but I've come to accept them as part of his condition and have learned to deal with them as a normal part of life.  I no longer get upset or worried when these happen.  I have certain things I do to try to bring him back which may or may not work.  (I'll explain all of this in a future post.)  All of the people that were there with us gave me their contact information and told me to let them know if they could ever do anything for us.

The other main appointment we had every week was with Allen's psychiatrist there.  This was also another extremely frustrating thing.  One of the psychiatrists that he had as an inpatient was great.  However, he wasn't there after we returned.  The one we saw there changed his meds every single week.  At one point he left for 2 weeks and never let us know and wouldn't assign us to anyone else so that Allen could still be seen.  This doctor never did any type of therapy with Allen other than medication management.  He also recommended Allen for a medical evaluation board just a couple of months after his injury.  I guess he thought that he was never going to get any better.  The requirement for this recommendation is that the service member has received optimal health care.  We didn't end up having this evaluation until over a year later!  That always seemed to amaze me.

Another department we were frustrated with was the speech department that evaluated him for cognitive therapy.  He had a hard time finding the right words and memory issues from his brain injury.  He had a couple of appointments with the speech therapist who concluded that once he got his PTSD under control everything else would fall into place and was therefore nothing she could do for him.  Once we came home, he was reevaluated by a speech therapist here in Ottawa, and was seen 3 times a week for almost a year (Thanks Julie and Brooke, awesome speech therapists!)  All the while, he still greatly struggles with PTSD. 

While we had many frustrations, we also had many positive things.  Allen had a great chain of command.  We also got to meet so many great people, some of whom were wounded or family members, others from the community, and others who work at the hospital.  Many of these people we are still close friends with today.  We also had the opportunity to do a lot of fun things that we never would have done.  We did all of the tourist stuff, went out to eat for the Friday night dinners, had some great events we were able to attend, and many other things.  We were able to network and meet many high ranking military officials.  

The first weekend in February, Super bowl weekend, we were also able to have my sister fly with our boys to see us for a weekend.  The Yellow Ribbon Fund paid for a hotel room for them that connected with our room at the Hilton.  We did all of the sites down on the mall.  A friend we had just met the day before they came, volunteered to rent a van and spend the day with us sightseeing.  She actually wouldn't hear of anything else!!  Leslie Commins is still one of our close friends today.  It was extremely hard to tell the boys goodbye again that time, especially since we had no idea how much longer it would be.  I actually thought that we were going to just go ahead and move them there with us after that weekend.  I thought for sure we would have them back by the next weekend and they would stay until we returned home.  However, we never did bring them back.  We kept thinking that it would only be a couple more weeks and we hated to pull them out of school for that.  We did take them to a huge super bowl party and got some great door prizes.  They also got to meet John Voigt that weekend.

We also got to meet some other neat people.  Michael W. Smith was performing a concert on my birthday and we were planning to go.  However, Allen had a migraine that day that took us to the primary care clinic that day so we missed the concert.  While we were in the waiting room waiting to go back, Michael W. Smith walked through.  So, we got to meet him and he gave us an autographed CD.  Now, I think that may have been better than actually seeing the concert!!

While much of this time here was difficult and frustrating, we also had good experiences.  The friendships we made during this time are worth all of what we went through.  We thank God for all we've come through and what we've learned because of it.  While the path we travel is still very difficult, we are thankful to have Allen home and to have our family together again.

Even Now......Gina