Saturday, March 31, 2012

Yes It Is Rude, Thank You For Asking....

Some people are so clueless.  Some people, who you would think should know better that is.  Most people do not get this lifestyle.  They have never experienced anything near to being called close to the path we now walk, so it is inconceivable to them. 

Just as there are so many lifestyles and situations I cannot comprehend.

I am not writing this to criticize, but rather to educate.  Maybe after reading this, just one person who didn't get it and maybe said or did something that could be perceived as rude, will see someone who is wounded, ill, disabled and open his/her eyes to the life they lead.

This did not start for me when Derek was injured.  Most people cannot conceive what it is to send a child off to the military or on a deployment.  When I told someone my son was deployed, I was often met by well-meanies who just didn't get it.  My favorite response of all time was when the fellow attorney turned to me and said, "Oh, I know JUST how you feel!  I just sent my son off to college."  Seriously?  Right!  Because college and Afghanistan are really so alike.  Yes, you had to say good-bye, but that is where the similarities end.  Your son is happy, healthy, learning, most probably partying, able to call home every day, not in any danger, etc.  My son?  Yes, he was healthy, but he was in mortal danger every day.  He was shot at.  He had to watch his friends get hurt, die.  He was able to call home once every couple of weeks.  Facebook maybe a little more often, if they weren't on another black out because of yet one more casualty.  I signed off from each chat wondering if I would ever speak with again.  So, please, tell me again how you get what I'm feeling.

And then he met the IED.  Then he became a Cat-A casualty himself.  He was the reason for the blackout.

That week between the phone call and the drive to Bethesda, I told so many people what had happened.  In addition to the wonderful responses, I also got, "but the war is over," "I know how you feel.  My son was in an accident and hospitalized for a week," "why did you let him enlist?" and other such comments.  I was sitting there not knowing if my son would live to fly to America, or even what condition he would be in if he did, and people didn't get it.  Yes, they meant well, but some of the comments were just.... what?!

One doctor stood at Derek's bedside and told Krystina and me she knew how we were feeling because her husband had deployed.  So not the same.  Thank you for the sentiment, but ... no.

Almost daily we encounter people who mean well, but they don't get it.  While still an inpatient, I was met with, "He shouldn't still be in the hospital."  Or one month after injury, someone asked me, "Is he home, yet?" and when I answered... "Well, why not?"

Someone asked Derek to compete in a tough mudder style "race" this summer.  He is barely walking!  Yes, that is a wonderful thought, but he is not yet ready for even an extended trip home.
Derek will be in rehab for at least a year, if not longer.  That means, he will not be home.  He will be at Walter Reed.  Yes, he might be able to come home for a short time on convalescent leave, but not until renovations are completed so he can get in the house.  My sister is kindly tearing her house asunder to make accommodations, because there is just no way for my house to be renovated, and I might have to sell it if I cannot find a job.... fast.  We have to widen doors, install a ramp, renovate a bathroom, etc.  He has no legs.  He will need to be able to get his wheelchair everywhere he needs to go.

Every day, we encounter people who stop short in front of us, refuse to move out of the way, play "chicken" with the wheelchair, come around corners without looking, push baby carriages into the hall without looking.....  It is easier when you have legs to avoid these obstacles or if there is a collision, it will be mostly minor.  A 370 lb electric wheelchair isn't as easy to move, and if he hits you..... ouch!  The electric wheelchair is easier to manuever than a manual or power assist, too.

When someone is using crutches, in a wheelchair, wearing a brace, using a cane, etc., that device is an extention of his/her person. 

Last week, we got onto an elevator and a woman in uniform got on behind us.  She tried to push past Derek while he was moving.  There wasn't enough room between his chair, and the wall of the elevator.  When she saw she couldn't fit, not for lack of trying, she turned to the front of the elevator and leaned against his chair.  I told Derek to roll forward and she stumbled.  When she got off, he asked me why I had him move forward, and I told him.  A man on the elevator commented that maybe she was just steadying herself.  I told him the elevator has a railing, and he would not like it if she had used his shoulder to steady herself without asking his permission first.  A person's wheelchair is no different.  It is part of him.  Hands off.  Please.

And then there is the stress and changes to our life. I had to leave my other children at home. So many do. One wife I know took her children out of school, away from their friends, away from the home, because Daddy needs this to make him better. Another wife was already home schooling, but she had to take her three children and move away from their home, extended family and friends. Another mother left her four children and baby grandson behind, because she felt she couldn't remove them from school at their level. They are living with friends of the family, because extended family was not available for her. Another wounded warrior lost custody of her children when she was hospitalized and now is starting the long road to not only healing, but getting her children back. My heart breaks for each of these women, and so many others who are in similar situations. Unless you are in this situation, it is hard to say what you would or would not do. If someone had asked me one year ago what I would do if Derek was injured, I couldn't have answered. We take one day at a time and do the best we can with the hand we are dealt.
I am probably going home soon.  Not for good, but because I need to find a job and take care of my other children.  I will be back and forth often, as much as I can.  This is tearing me apart.  I told someone the other day, who is not part of this lifestyle, and the comment I got was, "He is stable now, so what's the problem?"  That may be a simple, academic response, but there is so much more in the heart.  I watched him fight back from the brink of death.  I like most of his present team, but his primary doctor makes me beyond nervous.  Last week, she made a mistake with his pain meds.  No, we cannot change.  That's ridiculous, but it is how it is for now.  That makes me nervous.  I am torn.  I want to go home, because I feel it is time, but I want to be here, because I feel I can still help, and I am not comfortable with certain situations.

In discussing this with Derek last night, he suggested I start a non-profit to help wounded warriors.  He said, "Why don't you do that Hookers for Heroes?"  Wait... what?!  Did he really just say that?  Yes, he did. 

This concept is running joke among some of us here.  One of the wives was in her husband's ICU room and one of the medical staff asked her who she was and what she was doing there.  It was the way the question was asked that was just so wrong.  Her response?  "I thought he was cute, so I stopped to visit."  One of the women who work here said to her that her response next time should be that she is with Hookers for Heroes.  That would set them on their heels if she responded like that! 

How do you deal with rude behavior from the medical staff, family members, strangers on the street?  Humor, sarcasm, and an open mind.  Most people do not mean to be rude.  They just don't get it.  That's why we call them well-meanies.

Sunday, March 25, 2012

More Low Down on 62

We finally finished our inprocessing.  27 signatures, plus paperwork, interviews, meetings.  It was intense, but we finished early.  It took us 12 days, and we were given 30.  Had to get it done and off our plate so we could move on.  Move on to Battle Company, regular appointments, new adventures.
The inprocessing is different for the different services.  I was told that the Marines do not need signatures, but they have a page load of appointments.  I was also told by a Marine wife that she was told she and her children do not matter... it is all about her husband.  Krystina and I were given quite different treatment.  We were told that we matter, and if we need anything at all, we just need to ask.

On the Army side, once the inprocessing is done, you are turned over to your new platoon - either Able or Battle.  Then the fun begins.  The guys are expected to attend formation three times a week.  However, if they have an appointment, that takes precedence.  If the formation is mandatory, they will be told to change their appointments.

What is 62 like?  It's a real nice two bedroom apartment, but it has its limitations.  I previously posted pictures, a description of the apartment, and the contents of the kitchen, to assist anyone moving over here as to what they need to supply, the space available, etc.  Now I will address the difficulties we have experienced.  If just one of these make it to the higher-ups who can make changes, we will be happy.

The grade of the driveway leading to 62 is quite steep.  Electric wheelchairs handle is easily, but manual and power assist do not.  I guess it's a good workout for them to work those arm muscles pushing themselves up the steep hill, but going down..... guys have fallen.  I am concerned that they will be going too fast and will not be able to stop themselves before they reach the road.

The walkway to the wounded warrior parking lot is also a problem, but that is scheduled to be fixed within the next week or two.

The parking lot is small and not easy to maneuver.  Each lane ends with more parked cars, and it is too small to K-turn, so you must back out of the aisle.  Wounded warriors are given a blue hanging tag in order to park in the lot, but spaces are limited.  Anyone without a blue tag gets a $40 parking ticket.  The first time I went to Pass and ID to get the parking permit for the van I was given a yellow one.  I asked a cop who was driving through if it was a problem, and he recommended I park in the America Lot until the next day when I could get the right tag.

The apartment itself also has limitations. 

 - Bathroom.  The shower leaks and there is no vent.  The basin is not angled so that the water runs into the drain.  I guess to make it more stable for the guys.  The result?  A very wet bathroom floor, pooled water in the corners of the shower, and trapped steam.  This causes mold to grow, so cleaning is essential.  The shower head also does not stay up and points straight at the wall.  I used twist ties to hold mine up, but that is not an option for Derek and Krystina.  Derek needs to be able to take down the head to wash himself.

 - Front door.  The door is a safety concern.  It is heavy and not easy for the guys in wheelchairs to open.  There is no "peek hole" and no safety chain, so you have to open the door to see who is there if they do not answer when you ask, and once the door is open, anyone could push right in.  The front desk is supposed to refuse to give out the room number to anyone who asks.  The proper procedure is they call on the phone and ask if you want to see the person.  Then, it is our choice whether the person comes up, we go down, or the person is asked to leave.  This was tested a short time ago when someone came who we did not know.  They sent him up even when Krystina said, "No, thank you."  I pitched a fit, and it will not happen again.  It better not.  There are certain people we do not want to visit.

 - Beds.  Another difficulty in the room is the beds.  They are too soft, and as a result, they have given Derek a terrible back pain.  I sleep on the floor, because I have an injured back to begin with, but that is not an option for Derek.  Operation Homefront had some donated tempurpedic style beds, so Derek was able to get a new bed.  It is helping so much.  A hurting back was impacting on his ability to function and get to therapy.

 - Keys.  Some of the apartments have difficulty with their keys.  Some do not.  Some of the apartments the keys expire every month or so.  We had to have our door reprogrammed yesterday because after getting the keys rescanned twice, they still didn't work!

 - Fire.  The elevators stop working in the event of a fire.  We are on the 4th floor.  Derek cannot do stairs.  They assure us that in the event of a fire, fire doors close to trap the flames in one area, and then the fire department comes to the individual rooms and help those who are not able to do the stairs.  Doesn't make me feel better.  What if the fire is in the room next door?   Or this apartment?

 - Warrior Cafe.  The food is ... okay.  It's not the best.  It is expensive.  The guys have meal cards so they can eat for free, but if we are not with him, it costs. 

When the building was built, families and wounded warriors were asked what they needed.  Simple things like bathroom vent, showers that drain, peek holes and comfortable beds should have been provided without menion.

Nothing comes without challenges and difficulties.

On the plus side....

 - The rooms are spacious enough for a wheelchair to maneuver. 

 - The closets are large and accessible. 

 - The bathrooms have enough space for the wheelchair and the guys to move around. 

 - The kitchen is functional, so meals can be prepared and the Warrior Cafe avoided. 

 - The Warrior Cafe does have a pretty good variety most days, with vegan and vegetarian options.  The other day everything had cheese but the salad, so I was out of luck, but most days there is a better variety.  It may have been limited due to the drill they had on base that limited access for over a day.

 - There are pull cords in case of an emergency.  The call goes to the duty desk downstairs and someone will respond.  There is a cord in each bathroom and two in the living room.  The ones in the bedrooms are hidden behind curtains.

Overall, the apartment is comfortable.  Of course there are pluses and minuses.... positives and negatives.  That's life.

The good thing is that life continues.  Whatever obstacles we face, we eventually overcome.  Everything is temporary.  We can do this.

Friday, March 23, 2012

~~Adventures of Gingerbread Baby~~

A couple of weeks ago, a first grader from Tennessee sent Derek a gingerbread baby to have adventures with him.  We took him with us everywhere, and he had a great time!  The following is his story.  Because it is being sent back to first graders, I've written it in what I hope is wording that the first graders can read themselves.  Thank you for allowing us to have these adventures, Mara and Marisa!

Gingerbread Baby Visits with Team Derek

Gingerbread Baby went to Walter Reed in Bethesda, Maryland to stay with
Derek and his family.  The hospital cares for soldiers
who are hurt and helps them get better.
Gingerbread Baby met a lot of heroes in his travels!

Every day, Derek works out in the Matc (mat see)
(Military Amputee Training Center).
Gingerbread Baby helped him lift weights!

Derek lost his legs, and Gingerbread Baby cheered him on
when he took his first steps on his new legs!

All that hard work made Gingerbread Baby and Derek very tired.
Shhhhh.  Don't wake them up.

Derek also hurt his arm and can barely move his hand.
He works hard every day so that his hand will heal.
Gingerbread Baby counted how many blocks Derek was able to move.

Some of the heroes played with Gingerbread Baby.
Oh no!  Do not eat Gingerbread Baby, Will!

Gingerbread Baby tried on Derek's new legs.
Silly, Gingerbread Baby!  They are too big for you.

That cupcake looks good!  Gingerbread Baby was treated like a hero on Valentine's
Day and given a big cupcake by Derek's physical therapist.

Oh, Gingerbread Baby! 
Those are for the guys' legs, not your head!

Gingerbread Baby has to make sure he is healthy.
Dr. Diego gave him a check up.

Service dogs help the heroes and their families.
Bobbie gave Gingerbread Baby a ride.

Gingerbread Baby played with Tootsie, Laura, and Bobbie,
three service dogs at the hospital.

Gingerbread Baby visited Washington, DC with Team Derek.
It was windy on the top of the Newseum, so Gingerbread Baby hid in
Derek's backpack.

At the Museum of American History, Gingerbread Baby
pretended to hop on a subway.

Gingerbread Baby and Team Derek visited the Washington Monument.
Gingerbread Baby is hiding with Derek's sister.

Gingerbread Baby went for a walk around Washington, DC.

Gingerbread Baby joined Derek's family in the Matc.

Be careful, Gingerbread Baby!  Don't let Derek step on you!

Derek left the hospital after seven months and Gingerbread Baby
was there to celebrate with him.  After a good dinner,
he sat in Derek's favorite chair and watched TV.

Team Derek went to a fancy restaurant with other heroes for lunch.
Gingerbread Baby ate so much!

Don't forget to wash your hands, Gingerbread Baby!

Gingerbread Baby drove to New Jersey
with Derek's Mom for a weekend.

Jessica from Team Allen played with Gingerbread Baby.

Derek became sad when it was time for Gingerbread Baby to leave,
so he asked if he could stay a little longer and go to the zoo!
He not only went to the zoo.

"I love history," said Gingerbread Baby as he looked at
the Capitol and the Washington Monument from the Lincoln Memorial.

The whole family went to The National Zoo.
"Thank you for bringing me, Derek,"
said Gingerbread Baby.  "I love animals."

He saw....

and tigers...

and little monkeys!
Oh my!

"I love the zoo."


"Good bye, Team Derek!  I had fun!" said Gingerbread Baby
as he prepared to return to Tennessee.  Gingerbread Baby missed
all of the children in his first grade class.  He wanted to go
home and make sure the children were working hard!

Team Derek and Gingerbread Baby had a good time.
Thank you for visiting, Gingerbread Baby!

Wednesday, March 21, 2012

Getting Through This

Everyone who walks this strange, scary new path deals with it in his/her own way.  Some do better than others.  Eventually, we either make it through or crash and burn.  Most make it through.  I've seen the crash and burn.

My last entry was not directed at one person inparticular.  It was a compilation of a couple of experiences.  I have seen family members asked to leave because of inappropriate behavior.  Someone who came to see Derek in the beginning was almost asked to leave!  But for me asking for education and sympathy, she would have been asked to leave.  I recently heard of a family member being asked to return home because of drama she caused.  I know of a wife who was dealing with her husband dying who asked that certain family members only visit when she was not present, because of the drama they caused.  She could give lessons about how to show respect for others while dealing with hell.

That was the point of my last entry.  It was not to criticize or attack.  It was to ask for respect for those who also care about our wounded warriors.  I told one of my own children recently that I know this journey has been hard on the entire family, but that respect must be shown to those around, especially those who are trying to show support, no matter what hell you are currently experiencing. 

I've seen family members rage and cause problems.  Some recognized that the behavior was only a reaction to the stress of this situation and not directed at anyone in particular.  Those who apologize for their behavior and do not make excuses for it are the ones I respect.  I've seen family members make excuses and try to justify their inappropriate response.

Is there ever an inappropriate response to traumatic news or experiences?  Of course there is!  Two such inappropriate responses would be to mislead others or cause pain in others.  We can all be forgiven for our inappropriate responses, since we have all had them at one time or another. but it does not make it right.  It does not undue the harm that was caused.  We don't have to be perfect when dealing with this, but when we stumble, it is so very easy to say, "I'm sorry." 

I wish that I could go back to July 23, 2011 and some how change the events of that day.  If I could, I would warn the soldier who stepped on the first IED, so that there was no need for Derek to secure the landing zone.  That way, both of the boys would be saved from this journey.  Heck, if that were possible, I would go back to 2001 and get the message to the powers that be to stop the terrorist attack that caused our military to be in that God forsaken place!  But would that have really changed anything?  I firmly believe that everything happens for a reason.  We don't always know the reason for several years, and sometimes we do not like the reason, but there has to be a master plan, and there has to be a reason for this.  Without that belief, I would not have been able to survive the last eight months.

In the last eight months, my family has been through a lot.  Some of it might not seem like a big deal, but when added to the mix, it weighs me down and could be the proverbial straw that broke the camel's back.... several times over.

Here is a basic list of what we've experienced (most within the last few weeks, leading to me feeling done, finished and over) (I am not including the stress on Krystina and her family, because that is not my story to tell, and I will not reveal her secrets):

 - Derek was blown up.

 - Derek almost died, and was quite close to dying several times.

 - I had to leave my home, friends, family for the past eight months.

 - I almost lost three children (Derek in July and two others the last few weeks).  Three children in three different hospitals.

 - I have no health insurance to pay for two of the hospital stays.  I applied for insurance, but it is still pending.

 - I lost my job.

 - I have suffered a severe financial set back that has drained my savings.

 - I've had to raise five children by myself, with no input from their father.  It would be so nice to have a partner help carry some of this weight.

 - I had to deal with my ex after his abandonment of the children 12 years prior.

 - I had to deal with my ex and his family acting inappropriate.

 - I had to deal with my ex promising to resolve the child support issues and then reneging once again.

 - My wallet was stolen.

 - I cannot get a parking pass for my car because my vehicle registration was in my wallet.

 - I cannot get another registration without going through the leasing company for limited power of attorney, and then the motor vehicles is in NJ, where I am not.

 - My son's cell phone was stolen out of Derek's hospital room.  Thinking it was simply lost and we would find it when we moved to outpatient, I stupidly did not report it/  $640.00 in data charges later...

 - My one year old car has broken down three times since I have been here, and they cannot figure out why.

 - Derek's donated van had its battery die so it failed inspection the first time.  I had to leave for Maryland praying we didn't get a ticket for expired inspection.

 - The van's brakes went while out in DC.  (Operation Homefront fixed them.)

 - My back and neck have gotten progressively worse because I am not home and available to ongoing treatment.

 - I lost my unemployment because I could not attend a meeting.  Things were going on here that caused me to be unable to attend.  I am trying to reschedule and reinstate, but they are being.... well.... the state.

 - There are other things I am not comfortable revealing at this time.

I am strong.  I know that.  But sometimes even the strong get fed up and have enough.

We will get through this.  No matter how much we suffer, eventually, it will end.  I've asked God to give me a break, if even for a little while.

I won't make excuses.  I'm not perfect.  I will apologize when I am inappropriate, and I will call others to the carpet when I see inappropriate behavior.  When I see something that causes me pause, I want to draw others' attention to it, as well.  No one is perfect.  We all make mistakes.  We all should support each other, but unfortunately, as in all walks of life, some are just in it for themselves.  We all try to get through this hell one way or another, but not all of us have good intentions.  We, who are in this world, can usually tell which ones will be support and which ones to avoid.  We've had people on this journey give us nothing but unselfish support.  We've also had others be in it for themselves.  I avoid those who prove to me they cannot be trusted.

Stress is part of this walk.  Right now, I have a little too much on my plate.  I'll get through it eventually.  Until then, I will keep climbing.

More on Derek's recent journey to come.....

Sunday, March 18, 2012

Respect is a Two Way Street

First of all, I am sorry for not doing an entry in a while.  Circumstances in my life prevented me from doing so.  If I had, this would have been a drama page because what was happening was so overwhelming, and I do not like drama.  I did not want to drag everyone else into the drama in which I was consummed.  I might list the issues my family has suffered over the last eight months later in another post, but for now, something is irking me.

I have discussed this issue with other wounded warrior family members (the guys themselves, wives, fiancees, girlfriends and mothers), and most of us seem to be on the same page.  However, recently I have come across a couple who certainly march to a different drummer, and it is a drummer none of the rest of us would ever keep beat with - such as begging for money as your focal point, playing with people's emotions, and outright lying or certainly exaggerating about procedures, problems and quality of care.  The people who can about our soldiers and follow our stories deserve so much better!

Those of us who have chosen to share our soldiers' lives are in a unique position to get out to the people what it is really like in the war on the homefront.  We can show them our lives in this strange new world.  Not everyone will agree with everything we do, and they don't have to, that's okay.  However, respect should be shown not only by the followers posting on our pages, but most importantly, by us. 

The people who take the time out of their busy lives to check in with us mean the world to me.  Whether you read this blog, follow Derek's facebook page, follow Krystina's page or follow my page, I am so thankful for each and every one of you.  You don't have to agree with what I've said or done, I am my own person, and I make mistakes, and I don't always do the right thing, but I am doing the best that I can. 

I am not perfect, and I am not trying to say that only my way is right.  This is just my opinion.

I have never deleted a comment off of Derek's facebook or this blog (even my former caringbridge blog where I was attacked mercifulessly) just because I didn't agree with it or because it was "mean" to me.  It is your right to say how you feel.  I will respect that.  I would only ask that you respect me, as well, and the fact that I am going through a very hard time and not attack me.

Respect is a two way street.  I respect all of the wonderful people who follow our story, even though some of them leave comments I would rather not see.  It is my personal opinion that because you are taking the time from your busy lives, we need to be respectful, even when you are not, and we should never, ever use you.

Now again, I tread carefully here.  I really feel the need to stand up for all of you who take the time to come into our lives, but I do not want to outright criticize another family going through hell just because I do not agree with how certain things are handled.  There are just some things I feel are so over the top, and I must address them.

Recently, I viewed a page of a soldier whose journey I have been following and due to an ambiguous status, it had many people upset, including family members.  When given the chance to clarify, the page's admin choose instead to attack the people who were asking questions with: "Be happy with what you get.  Don't ask questions." (or something like that - the thread has since been deleted.)  I'm sorry, but my back went up.  These people are supporting your soldier and you first upset them with a status making them believe something horrible and then refuse to clarify and get upset with them for caring?  These people have feelings and have taken your soldier into their hearts.  They have given you respect, and you repay that respect by attacking them?  I'm sorry, that is just wrong.

We have the right to deal with this journey the best way we know how.  No two people deal with tragedy the same.  But there has to be common ground.  You must show respect, and if you intentionally or mistakenly upset those who are supporting you, you need to apologize, not act out more.  The events of the last few weeks with some of these families have shown me that there are some not so nice folks around here.  They will use you, play with your emotions, make excuses for their bad behavior, and then blame others when caught.

All I ask is that we respect one another.  For the families, please don't play with our emotions.  We all love the soliders and want the best for them and their families.  We cheer with you, cry with you, pray with you, grieve with you, and we hurt when you turn on us for caring and wanting more information when you allude to something else.  We are not here for you to play with. 

When we choose to share our lives and have people care about and want to follow our story, we owe them respect.  We also owe them updates that are factual and clear.  We choose how much to share, but when we made the decision to share our lives, we now have a duty to those who came to us and now care about our journey.  This is something we should cherish. 

I hope this made sense.  I'm just being protective, I guess.  I feel for those of us going through this.  I not only sympathize, I empathize.  But even so, you need to be respectful.

Have a wonderful day!

Friday, March 9, 2012

Unblock Me

Sometimes life is like a never ending game of unblock me.  Have you seen that game?  It's addictive.  You move blocks around in an attempt to free the red one.  That's life.

As each new challenge (board) comes, you are faced with a new pattern of obstacles in your way.  Wrong turns get your further entrenched.  You move things around and try to get the red block out, but it seems impossible.  Some boards (problems) are easy and you see the solution right away.  But some bog you down and you just cannot see a way out.

The problem comes when more than one board loads at once.  You try to solve one at a time, but  the sheer volume causes a shut down.  When you have too many to solve, you cannot find a way out.

That's life right now.  I am stuck in a game of unblock me with about a dozen impossible to solve boards.  I am overwhelmed.  I am trying to tackle one at a time, but several are screaming at me at once. 

Tuesday, March 6, 2012

Celebrating Firsts - An Update - Back to Childhood

When you have a child, you celebrate firsts. The first words, the first solid food, the first full night's sleep, the first steps. Having a wounded warrior is very similar. 

Krystina and I have been celebrating the little things and all of Derek's firsts since he was injured. His first words, his first food, the first time he sat up on his own, first steps, etc. 

The notable firsts are as follows, and not all are something to celebrate:

First day without legs - 7/23/11 (Derek laughed at this one.)

First smile - 7/30/11 (Day after admission to Bethesda when Krystina told him her mother was going to kick his ass.)

First day off ventilator - 8/4/11 (Only lasted four hours.)

First day off dialysis - 8/18/11 (25 days after injury) (Derek was in acute renal failure after his injury.)

First phantom pain started - 8/20/11 (27 days after injury) (This is actually a good thing because it means the nerves woke up.)
First day in wheelchair - 9/8/11 (47 days after injury) (41 days after admission to WR)

First successful break from ventilator - 9/9/11 (48 days after injury)

First words - 8/4/11 - "I'm sorry this happened" and "Chocolate milkshake."
9/9/11 - "Krystina" and "Siobhan"

First food - 9/13/11 (52 days after injury) (Jello during swallow study.)

First trip back to ICU - 9/26/11

First time off trach (decanulated) - 10/26/11 (95 days after injury)

First time off antibiotics - 10/29/11 (98 days after injury)
First time off oxygen - 10/29/11 (98 days after injury)
First night alone - 11/1/11 (101 days after injury) (one-to-one discontinued.)
First shower - 11/4/11 (104 days after injury)

First day in Matc - 11/21/11 (121 days after injury)

First pass - 11/24/11 (124 days after injury)

First pee the normal way - 11/29/11 (127 days after injury)

First time sat up by himself - 12/14/11 (150 days after injury)

First time picked up something with his injured hand - 12/28/11 (164 days after injury)

First time rolled over on his own - 12/30/11 (166 days after injury)

First time transferred from the chair to the bed and back again - 1/5/12 (172 days after injury)

First time standing - 1/31/12 (198 days after injury)

FIRST STEPS!!! - 2/9/12 (207 days after injury)

First overnight pass - 2/22/12 (220 days after injury)

First weekend pass - 2/24/12 (222 days after injury)

First night as an outpatient - 2/29/12 (228 days after injury)

So, like a child again, we are back to celebrating firsts. 

It is also like having a child again, because you are learning everything all over again.  After a warrior is injured, he has to learn to feed himself, walk, write, everything.  And you have to be prepared to help him through this.

Your diaper bag from the first childhood is replaced with a medical bag.  If he has a colostomy, you need to have all of your colostomy supplies in case something happens.  You need the medications and bandages for any wounds.  You need a change of clothing.  You must always be prepared.

But although this is a trip back to childhood, temporarily, it is not forever.  Although life is forever altered, the wounded warrior moves on to learn to do more for himself, except in the case of severe TBI.  In that case, it really is like having a child again.

You love him, so you do what you need to do.

Sunday, March 4, 2012

By The Numbers - An Update

 The following is Derek's hospital stay by the numbers, as of the day he became an outpatient (I previously did a similar entry, but now that he is an outpatient we have a copy of his discharge paperwork, so I was able to get this to a more accurate count).....

Days in the hospital - 228 days

Days at NNMC/WRNMMC - 222 days (one day more than seven months to the date of his arrival)

Surgeries - 36

Procedures - 19

CT Scans, X-rays - too many, I lost count! Basically, he glows and his kids will be born with three arms.

Blood products - 129

Days in SICU - 53

Days on ventilator - 54

Days on oxygen - 98

Days on contact precautions - 114

Number of Medications (inluding vitamins and supplements) at discharge - 16

Medical teams involved over course of stay - 34
Trauma, PM&R (Physical Medicine and Rehabilitation), Orthopedics, Orthopedics Hand, Endocrinology, Internal Medicine, Urology, Plastics, Nueropsyche, Infectious Disease, Gastrointerology, Hepatology, Nephrology, Oral Maxillofacial, Dental, Anesthesia, Radiology, Acupuncture, Social Work, Behavioral Health, TBI, Audiology, Assistive Techology, Occupational Therapy, Physical Therapy, Respiratory, Complex Wound Team, General Surgery Wound Care, General Surgery Colostomy Care, Dietary, Amputee Clinic, Seating Clinic, Speech Pathology and Nursing.  Now that he is an outpatient, add Warrior Clinic.

I cannot even begin to count the number of doctors! We went through three primary residents on the trauma team, Obi, Ben and Diego, and two on the PM&R team. There have been numerous interns and residents that have cycled through. Residents change about every two months and interns every four weeks, but that might depend on the service. Attendings are supposed to stay the same. 
As for special visitors, I could try to count, but I would probably lose count halfway through. We've had Barack Obama, Joe Biden, Jill Biden, Rodney Freylinghuysen Congressman from NJ, Jack Reed Senator from RI, Kansas, Montel Williams, Kid Rock, Sgt Slaughter, Joe Westphal (Undersectary of the Army), Gen Dempsey, Gen Chiarelli (former Vice Chief of Staff, Army), Gen Lloyd Austin (new Vice Chief of Staff of the Army) Gen Franks, CSM Grippe, Gen Odierno (Chief of Staff, Army), Director of NCIS, Wee Man, John Voight, etc.

Care packages? Cards? Letters? No way to count. We really appreciate all of the love and support from the community. Without that support, this journey would be so much more difficult.

Jobs lost since injury - 2

That's the entire hospital stay by the numbers!  Now on to outpatient and bigger and better things!

Climb to glory!

Saturday, March 3, 2012

The Lowdown On Being An Outpatient

I read emails and comments from people who have walked this path previously, but Derek commented that he felt they were exaggerating as to how intense it was.  Let me set the record straight.  This is not an exaggeration.  This is the down and dirty truth about the start of the journey as an outpatient.

Of course, this is our experience and the way that I have seen things, thus far.  I have heard from others that they had similar experiences.  I spoke at length to a mother and fiancee on Friday who gave me their experiences, and, so far, it feels the same as what we are experiencing.  Depending on your Warrior's level of functioning, both mentally and physically, your experience could be quite different.  The important thing to remember is that you are finally on the next leg of this journey.  Also, you have one month to complete the Warrior In-Processing, and you need to relax and take your time.

While an inpatient, the Warrior goes to the Matc for a few hours (generally two - an hour of OT and an hour of PT) and then can "relax" in the hospital room for the rest of the day.  Of course, there isn't much rest in the hospital with the revolving door, but you do not have to go anywhere.  As an outpatient, you leave your room in the morning and for six to seven hours, you are on the go.  It strains the nerves and drains the stamina.  Derek was quite overwhelmed his first day, as were we all.

When your Warrior is first released from the hospital, the WTB and the Squad Leader are supposed to help you not only remove all items from the hospital room, but make sure that all of your belongings are removed from the Navy Lodge or Fisher House or wherever else you might have been staying.  Although the Squad Leader was quite helpful getting the items removed from Derek's room, we received no help removing our belongings from the Fisher House.  Actually, I was harassed during one of Derek's appointments to get my things out immediately, after I had been previously told I had the weekend.  I could not leave Derek's appointment at that time, so we had to wait until his appointments were completed at 1515 (3:15 p.m.).  We were offered a van, but only until 1500 (before the end of Derek's appointments), but not offered bodies, that we really needed to help us remove our things.  In the pouring rain, Krystina, my Dad, and I removed all of the items from the Fisher House.  It was a lot.  Over the past seven months, people gave us a lot of stuff.  We both arrived with two small bags.  We were then brought down winter clothing by our families.  We also received clothing, blankets, bags, games, etc. from visitors and care packages.

The day you are actually released, you first meet with the Squad Leader who briefs you on what is expected of you as an outpatient and gives you forms to complete.  Please remember that you have one month to complete everything, and you need to go at your pace.  If the squad leader or anyone else rushes you, tell him/her to take a chill pill and relax.  Tell him/her that you will get it done, but that your Warrior's well being is paramount.  Sometimes the people with whom you are working forget that.  Sometimes they are wonderful, but sometimes....

First of all, accountability is very important, as it was in the regular military before the injury. Your Warrior is expected to call the Squad Leader every morning before 0730 to let him/her know that he is still alive and well.  You may make the call for him.
Your Warrior is also expected to attend formation.

Formation for the Marines is every morning, in uniform, at I believe 0800 or 0730.  The Army has formation on Monday and Friday at 0830 and on Wednesday at 0900, at least Battle Company does.  There are three companies for the Army - HHC, Able and Battle.  HHC is for inpatients and those in transition for the first month.  Of course, appointments take precedence, unless otherwise advised, so if there is a scheduled appointment, formation may be missed.  If it is a manatory formation, appointments must be rescheduled.

Your Warrior is most likely already scheduled to attend the Matc for OT and PT every day.  As an inpatient they were more lenient with missed appointments.  Not so much as an outpatient.  Also, as an outpatient, your Warrior is now expected to spend more time in the Matc working out on his own.  During this time, you might be able to escape for a little while, since it is not always necessary to hold his hand while he works out.

Your Warrior is required to attend several appointments in the first month and obtain signatures after the appointment or briefing.  There are about 27 signatures required.  Those signatures include the Warrior Clinic, 24 hour risk assessment by the social worker, 3 day risk assessment by the social worker, mail room, dental, nurse case manager, finance, solder assistance center, unit billeting, tricare, AW2, OT, etc.  Some of these can be completed before discharge, but that information was not provided to us.  Some of the signatures can be obtained in the New Warrior Briefing on Friday mornings at 0745.  The New Warrior Briefing should take care of 9 signatures.  The Briefing takes about two hours and must be attended during the first month.

In the first twenty-four hours, you must go to the Warrior Clinic, see the nurse case manager and squad leader, and have a 24 hour risk assessment.  In addition, you are expected to make your appointments at the Matc.

Thereafter, your Warrior is scheduled for appointments with the various medical teams involved in his care, such as Ortho, Endrocrinology, TBI, etc., in addition to the appointments required to obtain the needed signatures.  These appointments are made by the nurse case manager (NCM), who will work with you.  If your Warrior is not up to more than one or two appointments in addition to the Matc, tell the NCM and he/she should be accomodating.  Capt Bowser certainly is working with Derek.

An additional appointment that might be necessary and is not part of the check list is with DEERS to renew the ID card and the AKO.  Without an active ID card, many of the appointments cannot occur.  We are going on Monday, hopefully, since our day was a little too busy Friday. We also hope to get to the mail room and obtain not only the required signature, but a PO Box.  Also on Monday we have the Matc and the three day risk assessment with the social worker.  Another long day.

The meeting at the Warrior Clinic is with the new PCM (Primary Care Manager).  As an outpatient, your Warrior has almost all new doctors.  Some of the doctors in various services might stay the same, such as ortho, but for the most part, a new team takes over the outpatient care.  Thankfully, Derek will still be followed by Dr. West, the only doctor who has been a member of Derek's team since the beginning.

As an outpatient, your Warrior no longer sits in the hospital room and has labs, x-rays and doctor appointments at bedside.  You must now go to them.  Derek is going to be seen at wound care, Matc, Warrior Clinic, Wheelchair Clinic, Amputee Clinic (PM&R), TBI, Neuropsyche, Endocrinology, Ortho (for ongoing treatment on his hand), social worker, and any other service determined by his NCM and PCM.  Each Warrior has different services that he must see.

The NMA is expected to attend all appointments.  This makes it quite time consuming and stressful on the NMA.  Many of the warriors have diffculty with memory, whether it be from TBI, PTSD, anxiety, or the medications, so the NMA is an invaluable asset.  The purpose of the NMA is to assist in keeping appointments, attend to the daily needs that your Warrior cannot do himself, etc.  Some of the NMAs have more responsibility than others, due to the level of care the Warrior requires.  Basically, the NMA is agreeing to put aside his/her own life for the period of time that the Warrior requires care.  A job, schooling, etc. is not possible when he/she is required to accompany the Warrior to all appointments, and make sure all needs are met.  This is why the NMA is entitled to a daily allowance.  NMA orders are issued on a thirty day basis.  The NMA can be alternated so that one does not become too overwhelmed, and to allow the NMA to travel home, see family, attend to his/her own needs, etc.

On the plus side for NMAs, there are a lot of caregiver events and benefits that the SFAC, Yellow Ribbon Fund, and NMA Caregiver Support Group, as well as others, offer.  These include spa days, movies, dinners, lunches, etc.  One thing that the NMA must insure before attending, though, is that the Warrior's needs are met and he will not be in danger while he/she is away.

We have spent one full day as an outpatient, and it was overwhelming.  We have 5 of the 27 signatures we need, but we also have four weeks to obtain them all.  We almost had another one, but Derek's ID card is not working, so we have to go to DEERS on Monday (hopefully).   Just one more stop to make.
Friday, Derek went to wound care, OT, PT, Dr. West, the Warrior Clinic, and met with the pharmacist to input all of his medications.  We left the room at 0900 and returned at 1700, after completing all appointments and emptying the Fisher House.  To say we were all tired on Friday night is an understatement.

This weekend, we are relaxing, unpacking, organizing, and recouping for a busy week ahead.  We all got to sleep in this morning.  Derek and Krystina had a relaxing weekend on Derek's first overnight pass last weekend, but since I was at another hospital with Ryan, this morning was the first morning I was able to sleep in since Derek was injured.  It was heavenly.

Now a look at the accomodations of Building 62.  The Warrior is given a two bedroom apartment.  There is a full kitchen, a living room, two bedrooms and two bathrooms.  One bedroom has a double bed and the other has a single bed.  The beds are lower than regular beds to allow them to be more easily accessible to those in wheelchairs.  There is a TV, computer and printer in each bedroom.  Each bedroom has a large, walk-in closet and a bathroom with a large shower. 

The living room area has a reclining chair, couch, TV, DVD player, and a small table with two chairs.  There are also lamps, side tables, and an alarm clock in each bedroom and the living room, as well as a landline telephone in the living room. 

The kitchen contains the following:  microwave, dishwasher, refrigerator, six pots/pans (all on the smaller side), and four each - bowls, plates, mugs, small plates, knives, forks, spoons.  There are also two towels, two washclothes, and two hand towels, as well as one set of sheets for each bed.  The checklist we were given listed 10 oz and 14 oz tumblers, but our apartment does not have them.  The SFAC has some cleaning supplies that you can get, and there is a vacuum cleaner at the front desk that may be signed for when needed.

o set up the apartment, you will need to get paper products (toilet paper, paper towels, etc.), food, towels, laundry detergent, dishwashing liquid, etc., since all of these things are necessary but not provided.  Many people also get additional items for the kitchen, such as mixing bowls, serving spoons, carving knives, crock pot, toaster or toaster oven, coffee pot, etc.

The Warrior Cafe is downstairs where the Warrior can eat for free with his meal card, but sometimes it is just nice to have a home cooked meal.

That's the story, morning glory.  I've tried to give a comprehensive look at the first stage of outpatient, and the apartment.  Hope this helps those of you coming behind us to know what to anticipate, and to know what you need to buy to set up the apartment.  If I've forgotten anything or if there is a particular question that you have, leave a comment and I will do my best to address it!

Thank you for continuing this long journey with us!  We are closer to the top than ever before.  Climb to glory!  All the way!  To the top!  I'll meet you there with a cold drink and a big smile.