Tuesday, January 31, 2012

Stand Up and Be Counted

There really isn't too much to say.....  because the pictures speak volumes.  Here, see for yourself:

He's shorter than Krystina (who's tiny herself!), but not for long!

The prosthetic was ready, Derek got onto the tilt table, and.....  (drum roll, please) .....  HE STOOD FOR THE FIRST TIME IN SIX+ MONTHS!!!  Yes, he was straped onto the tilt table, but that is to help with his balance.

We had a real cheering section present for him.  Team Allen came, all four of them.  Thank you, Jessica and Chaz and your two little cuties!  The three facility pups came - Laura Lee, Bobbie and Sgt Archie!  With them were Marshall, Amy and Lisa.  Amy and Lisa are Archie and Bobbie's Moms, and Marshall is Archie's daily handler.  Also present were a slew of doctors - Dr. Kim, Dr. Sam and Dr. Himmler.  Derek's PT, Kerry, and the prosthetist were also there. 

Derek said it felt weird to have the blood rush to his injured hand and arm for the first time, and the prosthetic hurt his stump a little.  He will get used to it.  He doesn't even like anyone to touch it!  When he gets out of line, Krystina and I will rub his stump.  It drives him crazy. 

HIs comment today...  "I have a leg!"  It was precious.

The wounds on Derek's hip are healing, and his strength is getting better. 

I am so very glad Dr. Kim is back, because she gets us.  Derek may be a hip disartic and an AKA; however, he cannot be compared to other hip disartics+AKAs and his timeline is very different.  One actually walked yesterday on his one prosthetic by holding on to the bars.  He was injured in December.  He is so much further in his recovery than Derek.  He didn't have the extensive arm injury, internal injuries or infections.  He is stronger.  He can already transfer himself everywhere by himself.  You cannot compare any two guys.  They are all different.  They all have a different combination of injuries, and they all heal at different rates.  I've said it before - this is like ordering the whopper.  One might get pickles and ketchup only, and one will get the works.  They all get the whopper, but each one gets it his own way.

Derek also had a visit tonight from the medic from his unit who was injured a couple of weeks before him.  He heads back up to Ft. Drum tomorrow, so he came by.  He has visited Derek many times.  Good luck!

A video of Derek standing is on his youtube account:  youtube.com/acauseworthfighting4
Good things are happening.  It's been a long road, and there is still a long road ahead, but we will get there.  We will keep climbing this moutain until we reach the top.  And then we will look back and proclaim, "What a journey!"  So, climb to glory, baby!  To the top!  I'll meet you there.

Monday, January 30, 2012

Dog and Pony Show - Military Family Medical Leave Act

Let's start off with a wonderful picture:
And here's another for good measure:
Now a momentary bitch session....  followed by some hopefully good information.

We were contacted last week and told that there was a special event at the White House to honor caregivers and we were selected to participate.  Actually, it was a White House sponsored event at the Dept. of Labor.

On Friday, we went through the hassle to go to Fort Belvoir and get Derek his dress uniform.  It didn't come with any of the things that they attach to the uniform, so Derek's Squad Leader helped with some of his stuff and this morning at 0700, we were in 62 to get some other stuff.  Derek's uniform looked sharp, even though it didn't have everything and didn't have his battalion crest.  The best part of today was that Derek got a free dress uniform.

We showed up at 0700, as instructed, and the bus left at 0830, half an hour late. 

The ride and set up was longer than the "program."  First, the Secretary of Labor, Hilda Solis, spoke. 

She introduced a wounded warrior wife whose husband was injured three years ago in a helicopter crash and she told her story.  Then the wife introduced Michelle Obama who discussed proposed changes to the FMLA as it pertains to military families.  More on that later.  Some of the changes are good.  But they are only proposals.  Not set yet.  And too late for those of us living this life.

She spoke for a few short minutes, and really the only "honor" for the caregivers was the statement, "We want to recognize the extraordinary dedication, sacrifice and service of our nation's caregivers, not simply with words but with deeds."

On the way out greeted only two of the dozen wounded warriors present and the military brass.  One of the Moms asked for her to come back and see the other wounded warriors, and she was told that she had already left.  If she wanted to honor the dozen caregivers present in the audience, she could have spent ten minutes and greeted them all!

This was supposed to be an event to honor caregivers?  Really?  This is why we dressed up, got up early, and paraded in?  Seriously?  So not worth the effort.  Well, if what I discussed with Ms. Solis pans out, it might have been worth half the effort.

It was wonderful meeting the Commandant of the Marine Corps, Gen. James F. Amos (picture 1 below), the Chief of Staff of the Army, Gen. Raymond Odierno and his wife, Linda (picture 2 below), and the Joint Chief of Staff of the Army, Gen. Martin Dempsey and his wife, Dennie.  We had met Gens Odierno and Dempsey and their lovely wives before.  Linda brings her pup Tootsie to visit us!

I missed a picture with the Dempseys!

When we got back, we had a visit from Major General Mark Milley.  What a great guy!  He is the new commander of the 10th Mountain Division at Fort Drum.

So, this was not what they told us it was.  Apparently, it was an honor to the caregivers to sit and listen to a speech about a proposed policy that won't do US any good.  And Derek was miserable.  He and the other guys sweat like mad, and Derek was in pain.  It was not fun.

So what are the proposed changes?

Right now, if you are on military orders, you may take an unpaid leave of absence from your employment for up to 23 weeks without fear of losing your job.  The change would lengthen that to 26 weeks.  But this only applies to businesses with more than 50 employees.  Doesn't do me any good.  Doesn't do most of us any good, because most of us worked for smaller employers.  We would rather have a change that states we won't be paid while we are away, but as long as keeping a space for us would not cause unnecessary burden on the employer, our employment would be held for up to one year.  Let's face it, for the types of injuries these guys suffer, 23 or even 26 weeks is just not sufficient.  We have been here 27 weeks, and we are still inpatient.  While we are not typical, most guys are outpatient after about 60 days (8 weeks), and then start rehab.  Rehab lasts about one to two years, depending on the severity of the injuries.  However, after a year, most of the guys are stable enough to not need a constant NMA.

Another part of the FMLA is that a family member can take unpaid leave of up to 12 weeks when a member of the National Guard or reserves is called up to deploy.  They want to extend this to the regular military.

This proposed changes would also permit other benefits to the caregivers, such as medical insurance.

Additionally, when guys come home on R&R, it is for 15 days.  Family members cannot take that time off of work, unless they have enough vacation days.  Right now, the approved time is only 5 days.  They want to extend that to the entire 15 days unpaid leave without penality.

This would also extend to allow family members to take unpaid leave to help vets for up to five years after their injury.  That doesn't mean the family member can take five years off.  It means that for up to five years after injury, a spouse, parent or child can take 26 weeks to care for the wounded warrior.

They are considering comments for the next 60 days before considering making these proposals final.

But like I said above, none of these changes help the caregivers of today.  They are all for future wounded warrior caregivers.  I, like so many others, are facing the toughest challenge of my life.  Now, in addition to having to help my son recuperate, I must face a job search in this horrible economy.  And I am not even home to look for a job.  Where do I look?  Maryland and move my children here at their ages?  New Jersey when I am not there and cannot give a start date?  It's a real quandry.

However, I was advised today that other policies are being considered to help caregivers during this time.  This was not part of the meeting, but during a conversation prior thereto.  If these proposed changes come to pass, it would really help caregivers, both present and in the future.

So, although today was disappointing, it was an experience.  And Derek got his dress blues!

Tomorrow...... standing on the tilt table!  (As long as Mike finished his prosthetic.)

Good things are coming around the corner.  Although we are still in the darn hallway after the door to our old life closed, doors are starting to crack open.  We will make it, even if we have to drag some people with us to make the changes we need!

Climb to glory!  All the way!  To the top, baby!  I'll meet you there.... with a drink in hand!

Sunday, January 29, 2012

A Real Cluster

Tomorrow, Krystina and I were invited to participate in a ceremony honoring caregivers.  It is quite an honor. 

In order to be ready, Derek was told he needed his dress uniform.  His Class A's are in NJ.  The Army has a new ASU which is now the dress blues.  A non-profit offered to pay for the uniform for the guys who are attending the ceremony.  On Friday, we went to Fort Belvoir.  We were told not to buy the ribbons and awards that go on the uniform, because they would all be provided.  Derek gave the Sgt a long list of everything, and when we left, two Sgts were gathering the items in baskets.

We arrived to pick up the tailored uniform last night.  We were given three ribbons.  That's it.  We were not given a ribbon bar to put them on, his CIB, his jump wings, his infantry cord, the unit citations, or any of the ribbon earned in basic and prior to deployment.  Derek was not happy.

Derek's Squad Leader showed up today and it letting Derek use his jump wings, and cord, as well as the insignias that go on the collar and shoulders.  Tomorrow, we are to show up at 62 at 0700 to get the other stuff..... I hope.  Derek is not happy.  He does not want to wear a uniform that is not perfectly squared away. 

 Last minute and half assed.

However, he is happy that his promotion came through and his uniform is sporting the SPECIALIST rank! 

But it should be a good day tomorrow.  Krystina and I are excited and feeling quite honored to be selected. 

So, we will have quite a lot to report tomorrow.  I am charging my camera battery and plan to take lots of pictures!

Yesterday, we got out to see a movie.  Mission Impossible:  Ghost Protocol.  Good movie.  Edge of your seat action.  We wanted to go to dinner after, but Derek was not up for it.  I hope he makes the long day tomorrow!

Today, we hung out in the room, resting for tomorrow.  Derek's best comment today (warning: crude language ahead):  "But, Mommy, I almost died!  I'm a cripple!  I got one leg!  And it's only ten inches!  There are dicks longer than my leg!"  He is also planning on pimping me out to the secret service tomorrow!  Oh, Derek.  He just wants me to find a good man.

Tuesday Derek is scheduled to stand on his new prosthetic!  Woot!

Exciting things this week!
So, for tonight, keep your head up, your eyes on the prize and climb to glory!

Friday, January 27, 2012

Exciting Events

Things you hear at WRNMMC in Bethesda that no longer sound weird to us: 
"Your feet didn't come in."
"I'm taking off my leg."
"Don't knock over my leg."
"It's a stump sock, not a hat."
"Where are my legs?" 

On Wednesday, Derek was casted for his prosthetics.  The feet were ordered, as well, and we were told he could stand on the tilt table with his right prosthetic on Friday at 1300 (1 p.m.).  No go.  The feet haven't arrived.  Our target is now Tuesday at 1000.  The left leg is going to take a little longer to make, because it is a bucket for the hip disartic.  Hopefully that one will be finished by next week, as well.

Wednesday, Krystina and I were advised that Derek's squad leader had submitted our names for a ceremony honoring outstanding caregivers.  We were told it is at the White House.  Someone else said it wasn't.  I guess we will see when we get there on Monday.  I have to say, I am a bit excited.  It's quite an honor.

At first, we were told Derek could wear a nice polo shirt.  The dress is business casual.  Last night, at 1715 (5:15 p.m.), we were called and told Derek needed his ASU - the new dress uniform.  Are you kidding me?  So this morning we made our way over to Building 62 at 0800.  After waiting an hour for the late ones, we took off to Fort Belvoir to get fitted for the uniform. 

Because a couple of us had early afternoon appointments, they had two buses to take us back.  We made it back by 1300, but since the feet hadn't arrived, Derek just went upstairs to lie down.  He is still working on that stamina, and I am concerned for Monday.  He wasn't disappointed that he could not stand today.  He said a few more days do not matter, and he really wanted the uniform!  A non-profit paid for it, so it didn't even cost the guys anything!  It will be in Bldg 62 for us to pick up tomorrow, and Derek's squad leader is coming up on Sunday to make sure the ribbons and awards are placed correctly.

A very annoying part is the beret.  They did not have ready to wear berets, so we have to shave it and then shape it.  Ugh.  It will be an annoying Sunday!

But I am a bit excited for Monday, for many reasons.  I am excited for Derek.  I am excited that we are being recognized for the hell we've been through over the past six months.  I am excited to be with the other families in such an atmosphere (however, if that one guy keeps saying "we missed ice hockey" like he did all morning, I will smack him!  Once or twice was okay, but he said it at least a dozen times!).

Krystina is borrowing a dress from one of the nurses.  It is a beautiful black dress, and I have an extra blazer down here that she can wear over it.  It looks so good on her.  I have my black suit with me from the meeting in DC with Jessica in October.  We are ready to go!

Walking out of the hospital tonight a thought struck me.  I talked to another parent on the way out whose son is still at the beginning stages.  He is still looking at what he lost and what he can no longer do.  Derek went through that, and sometimes he still feels a little down, but his attitude now is that this has opened so many new opportunties for him that he would otherwise not have. 

The other guy will get there.  Whether we like it or not, the future is coming for us.  Some of us are dragged kicking and screaming into the future, and some of us run full force into the arms of the future with wild abandon.  Whichever way is best for you, don't fight it.  Things change, sometimes for the good and sometimes for the bad, but we control how we deal with them.  I am tired.  I am drained.  I am ready for this journey to end.  But I am still embracing the good and choosing to let the bad escape from my brain.  It doesn't do me any good to dwell on the negative.

Look at all the experiences we have had that we never would have had.  We met the President.  Whether you are a fan or not, it's still the President and saying we met him is, well, cool.  We met Leroy Petry, a Medal of Honor winner.  We met senators and congressmen.  Rodney Frelinghuysen, our congressman from NJ, visited three times!  We have met Sgt Slaughter, Wee Man, Montel, Kansas, and other celebrities.  We have met Generals and the brass from the Army, Navy, Marine Corps, and Air Force, as well.  We have also met some of the nicest and greatest people who just happen to be on staff at WRNMMC. 

Continue your journey into the future.  And remember, if you don't feel it, fake it until the confidence takes root.  You can hide a lot of pain and insecurity behind a bright smile.  So, smile and greet your challenges head on!

Climb to glory!

And remember, Friday is Red Day until they all come home!

Wednesday, January 25, 2012

A Peek Into Our World

A lot has happened over the last few days.  Yesterday we had a Discharge Planning Meeting.  I would have liked it if Dr. Kim was there, but we got some answers.  I really liked Dr. West pointing out to everyone that our comfort level as NMAs also matters.  We need to be comfortable with the process and with his outings.  My concern is that his stamina is just not there yet and I don't want him rushed.  He only lasts a few short hours before needing to go back and rest.  At the meeting, Derek found out just what will be expected of him when he goes outpatient.  It's a lot. 

Today Derek was finally molded for his prosthetics!  About time!  His shorts arrived and they seemed way too small, but the prosthesist (sp?) was able to get them on him.  He said that as Derek wears them and is more active, he will shrink, so the shorts should be okay.  The right leg should be ready on Friday and the left leg next week.  Because of the hip disartic on the left, that prosthetic is a bucket. 

At first, the guys get "shorties."  This allows them to practice standing and walking before they get to their real height.  Of course, if the guy is only a single amp, he wouldn't get shorties.

On Friday, Derek will stand in the tilt table on his right prosthetic.  We are so excited!  This will be the first time Derek stands in over six months!  And maybe next week he will be ready for his first steps.

A typical day starts at 7 or 8 when Krystina and I get up and get showered/dressed/ready to go.  Derek wakes around 8 and has breakfast.  If we are not there by 8, the nurses will order for him.

Occupational therapy is every day at 10:00 and physical therapy is every day at 11:00.  Derek doesn't always make it because his stamina is not yet at that point, but he is getting there! 

At 12:00 we head back up to his room and then the revolving door starts.  We usually have visitors all day!  Between visits, the afternoon is spent resting.

Derek has been at WRNMMC for so long that he is part of the family.  The facility pups come and hang out with us during the day.  They are the most important visitors!  Today Archie came and hung out for an hour.

Derek's room is personalized to give him motivation and encouragement.

To the left of the TV, Derek's Army flag hangs.  It has been signed by the Army brothers who have come to visit while on R&R, or other Army personnel who have stopped by.  By his flag is the Team Derek wreath made by Meggan Keith. 
To the right of the TV hangs an American flag that was signed by Derek's platoon in Afghanistan.  We also have a poster that says, "Remember Your Successes, Big and Small."  We also have hung pictures and cards to motivate and encourage him.
Over Derek's bed I hung pictures and cards made by the kids in the various schools who have been supporting him on this journey.  We love the letters from kids!  They are so honest and pure.  "Sorry you got blown up,"  "Sorry your friend died,"  "Sorry you lost your legs," etc.  They make us laugh.
On the door we have photos of Derek with his family and a 10th Mountain dry erase board.  Just inside the door is a poster made by Girl Scouts from West Caldwell, NJ and his 10th Mountain flag.  Family and friends have signed his flag.
Above is another view of the wall.
Along the window sill, we have a plant from the O'Mahoneys, the bears that have been sent to Derek, and Derek's DVD/BluRay collection.

So, that is a little peek into the room and our daily routine.  We have been here six months, and Derek is finally getting stronger and more assertive with himself.  Before long, we will be in Building 62 and ready to take those important first steps on the road to the new normal.

If you are on Facebook and have not done so, please check out Team Derek and "like" it.  More photos and little stories are posted almost every day!

The plans for the rest of the week include a special visitor tomorrow, working out at the Matc, finally standing up, and attending the Aleethia Dinner on Friday nght.  We were told today about a special event on Monday, but I am not going to say anything until afterwards. 

Keep climbing to glory!  If you are having a hard time, just tough it out and get through it.  Eventually, it will end.  Be positive, be happy and be blessed.

Organizations that Help Military (WW, deployed AND stateside)

There are some wonderful organizations out there.  I previously profiled a couple of groups that specifically help our wounded warriors, but there are groups that help the wounded, deployed and stateside service members, and they deserve a shout out as well.  If you have a few extra pennies, these organizations are wonderful and a lot of the donations are tax deductible.  If you are looking for a way to help, check out the following and see if something appeals to you!  Depending on which group, the following want donations, care packages, volunteers, cards, letters, as well as many other contributions.

Adopt a Solider - One great organization is headed by Alan Krutchkoff.   This group adopts platoons who are deployed and sends care packages.  They even recently made a visit to Kuwait and brought Christmas trees, packages, and Washington Red Skins cheerleaders.  Alan and company has also been to visit Derek and arranged to have him sent some goodies from sports teams and his favorite people (i.e. Chuck Lidell).  http://adoptasoldierplatoon.org/

Soldiers Angels - This group supports all branches of the military.  They provide aid and comfort to deployed, stateside and wounded warriors.  They have blankets, canes, baked goods, care packages, etc.  SA even brought Derek a computer!  It's a really nice one, too.  http://www.soldiersangels.org/

Hugs for Heroes - This group sends care packages to our deployed military.  Their packages contain enough items for everyone in the unit, and according to their website, they have shipped more than 8 tons of goods!  http://www.hugsforheroes.org/

USO - The USO has been around for generations, providing support and encouragement to our men and women in uniform, deployed, stateside and wounded.  http://www.uso.org/

Our Military Kids - This wonderful group concentrates on our children.  Children of deployed reservists and wounded warriors are given grants (sports, fine arts, camps and tutoring), care packages, and support while they deal with either a parent who is away or a parent who has been wounded.  http://www.ourmilitarykids.org/

Tunnel to Towers - This group is near and dear to my heart.  This is based on the firefighter who ran through the tunnel to get to the World Trade Center on 9/11.  Each year they sponsor a run that copies what Stephen Siller did on that fateful day.  They are now building homes for quad and triple amputees.  http://www.tunneltotowersrun.org/

Gary Sinise - His foundation helps vets and first responders.  http://www.garysinisefoundation.org/

Operation Gratitude - Care packages for deployed!  http://www.facebook.com/OperationGratitude
The following website lists many other groups and organizations.  If you have a little extra time and/or money, check this out.  http://troopssupport.com/

There are so many more out there.  If you really want to help, it will be appreciated.

I hope you were able to find something that appeals to you.

God bless!  Climb to glory!

Monday, January 23, 2012


Started the morning by attending a special promotion ceremony for the wonderful Chelsea!  Wish she was on 4 center so Derek could have her, but she is not.  Her Mom taught Derek's LT.  I was honored to be invited to attend!

Sean left today.  Thank you, Hero Miles!  It was sad seeing him leave.  Derek didn't want his little buddy to go back, but he has school.  Hopefully soon he can come back.

Tomorrow we are having a Discharge Planning Meeting.  I really wish we would wait until Dr. Kim returns since she is Derek's doctor, but that doesn't seem important.  Derek's pain is not well controlled, but he said he will just live with it.  That concerns me.    He is still not able to attend the Matc five times a week, or to stay in his chair for several hours at a time.  The longest he went was for the Army/Navy Game, but he suffered.  That is not okay with me.

No Matc today.  He looked whipped when I got there, but he said he would go.  I had my doubts.  A little later he said he was too tired.  But then in the afternoon he used a visit from Wee Man to bolster his reason for not going.
Derek loved him!

I feel the need to vent a little tonight.  Please excuse me.  If you don't want to read it, stop now.

Still with me?  Well then.  Here goes nothing.  I am extremely stressed out, not sleeping, have the weight of the world on my shoulders.  Some things that may not usually bother me, bother me now as a result.  My patience has officially taken the Metro and left.  I don't know when it will be back.

First of all, the mail.  It stinks!  So many have told us that they sent cards and they were returned.  Others have sent packages and cards that we have never received.  I am sorry.  We found out through another wounded warrior that they are being sent back from the main post office and not even getting here!  How do we fix that?  We want our mail!

Everyone who goes through the experience of having a loved one injured handles it her/his own way.  I am not going to criticize how someone else handles it, because it is a very personal journey.  I have seen the mothers/wives/fathers who sit and cry every day.  I have seen the fathers/mothers/girlfriends sitting looking shell shocked and unable to participate.  I have seen the wives/mothers/fathers lash out and fight with everyone.  I have seen the fathers/mothers quietly support their sons and stay by their sides throughout the ordeal.  I have seen the mothers/fathers/girlfriends leave everything behind, quit or lose their jobs, drop out of school in order to help their sons/boyfriends through this.  I have seen the mothers/wives who are confrontational or do nothing but complain.

I have seen the family members up and walk away.... okay, wait.  That one gets a criticism and a vent session.  How can you walk out on someone you claim to love or have loved when he needs you most?  How do you fail to contact him while he is in the hospital?  How can you look yourself in the mirror when you either walk away from or ignore someone who is hurting?

What is really annoying are those "family" members or friends who had little or nothing to do with the soldier before his injury but now come out of the woodwork.  Facebook requests and messages, visits, emails and cards from people who didn't take the time to reach out pre-explosion are now there.  Where were you?  You had the opportunity to be part of this amazing young man's life before, but you didn't.  It is easier to accept the warm wishes from strangers who didn't have the opportunity to know him before than it is to have someone who rejected him before try to be there now.  I know they don't see it as rejection, but what would you call it?  He was the same awesome young man pre-IED that he is now.  Where were you?  Since you didn't want to take the time before, we really don't need you now, especially when you only show up when it is convenient for you and then disappear again.  This hurts him.  Just stay away since it is obvious you don't have the intention of being there.

Finally, I have seen the family members who make it all about them.  It's not.  It's about the man in the bed!  These sympathy whores do nothing but whine and cry about how hard it is and some of them post the most horrendous pictures.  Think about it.... if you were lying in a hospital, having a life saving procedure, or if you had a particularly nasty looking wound, would you want a picture taken and posted for the world to see?  Discuss it, but don't post it.

Dignity.  Can we please leave these guys with their dignity?  They have lost so much, and they are subjected to examinations, procedures, medications, etc. on a daily basis.  Can't we leave them with their dignity?  Ask yourself if he would want the world to see him in that situation.  If the answer is "no," don't post the picture.  If the answer is "I'm not sure," don't post the picture.  Most of us would not want a picture of us getting a medical procedure.  If he says to post it, use your common sense.  He is under the influence of so much medication.  Does he really want that picture posted? 

I have some horrible pictures of Derek from when he first arrived.  I took them for the sole reason of showing him how far he has come.  I wouldn't think of posting them.  When he is off the medication and his head is clearer, if he requests that they be posted, then I will.  But he has to request it.

I have shared many pages from other wounded warriors.  Most of them have respected the guy's privacy.  Some have not.  It breaks my heart for these guys.  They are medicated, injured, out of sorts.  They are heroes.  Let's please respect them.

Okay.  Vent over.  Sorry.  Sometimes you gotta let it out or you will blow!  We stay positive, and we look for the good every day.  We thank God for our blessings, and we count those blessings often.  But sometimes, things get so heavy that I have to vent.

Now we are on to getting Derek to the Matc for the rest of the week and getting him stronger.  He is almost there.  He is making that climb to glory, and we will be celebrating, with all of you who have supported him and wished him well, at the top of that mountain!

Sunday, January 22, 2012

On The Road Again

Derek was able to get out of the hospital today for his own choice of activities and just with the family.  We only went to dinner, but it was just us, and it was wonderful.  Now that we have a van for Derek, donated by the wonderful Rupple family, we are able to get out whenever we want.... or whenever Derek's pain allows us.

Dinner was at the Cheesecake Factory, and now that Derek is no longer on a special diet (low phosphate), he had a wonderful meal!  The van is great.  It rides so smooth, and the passenger seat is out, so Derek can sit up front!

The only problem is Derek's pain.  It is not very well controlled.  We do not understand why he has to wait to be an outpatient to get a custom seat.  He is not comfortable in his wheelchair for any length of time because of his wounds.  They want him to get out more to increase his stamina for when he is an outpatient, but they won't give him the tools he needs to be able to get out more.  I intend to raise this concern during the meeting tomorrow.

Derek is concerned that I want to switch his PT.  NO.  I like her as his PT, and most important, Derek likes working with her.  I just want my concerns addressed. 

So, although we were only able to go out for a quick dinner and never made the movie because of the pain level, it was great to get out.  Derek handled the hustle and bustle of a busy restaurant very well, and there were no uncomfortable stares.  That is my concern.  I don't want Derek to feel funny about being out. He never was one for the attention, except when he was seeking it.

Sean leaves tomorrow, which is very sad for us.  Derek doesn't want his little buddy to go back to Jersey.

It was a quiet weekend, and Derek is getting stronger.  Our first foray out was a success.  Derek is coninuing to climb to glory.  He will make it!

Saturday, January 21, 2012


We have been in Bethesda for about 180 days.  We have met some fabulous people.  People who work together to get to the new normal with grace, civility and kindness.  But then there are others.  I met an other today.

Derek has been using a special prone cart to take a shower.  He is not comfortable in the typical shower chairs due to his balance issues and wounds.  When a former patient left, I will call him Jack, his prone cart was left behind because it belongs to the hospital.  It has Jack's name on it.  When they were looking for something on which Derek could comfortably shower, they brought the prone cart.  It was a lifesaver.  Derek was finally able to shower comfortably.

A couple of weeks ago, the other ward where Jack had been came looking for it because they said they had a patient who needed it.  We were told that when Derek needed it, we could simply request it.  Yeah.  Right.  Not so much.

Derek's nurse and I went looking for it today.  He finally has his stitches out and can take a real shower again.  We found it sitting at the entrance to someone's room with their stuff piled on it.  We were told it was specially made for that patient.  We were told it belonged to them.  Really?  Then why is Jack's name clearly on it?  After a bit of a battle, we got the cart.  We were told this patient isn't even able to use it yet.  Then why the battle?

Now i am concerned that if we send it back, it will be used as a shelf again, and when Derek wants to shower tomorrow or Monday, it will be another battle.

Why is it a battle? Aren't these specialty items for the patients' comfort?  Shouldn't all of the patients get the benefits from them?  When we were told that another patient needed it, we willingly sent it down.  He is not even using it.  Why can't we use it?  Now I'm going to act like a kindergartener - We were here first.  We had it first.  We are willing to share, but you must, too.

But this is not typical.  It is just an aggravation we had today.  Most of the patients and families work together and help one another. 

This is not going to spoil our views. It's just one Mom having a difficult time and wanting it all. We need to work together.

The TVs went out today because of the weather, they believe.  Because it is the weekend, no one is available to fix them until Monday.  They were able to come around with some portable TVs that have limited channels and a DVD player.  However, because it is the weekend, the Red Cross is not around to give out DVDs for the guys to watch.  Not a problem for Derek.  He has a large stack of DVDs and BlueRays, and he willingly shared with the other patients.

We had wanted to go out today, but Derek wasn't up for it.  Maybe tomorrow.  Now that we have the van, we can go out any time he feels up to it!  Hopefully, it will be more and more as he gets stronger.

Climb to glory!  Go, Derek!

Friday, January 20, 2012

A Transition

When your child goes off to college or joins the military, there is a process of letting go.  He is out of the nest and flying on his own.  You are always "Mom," but your role has changed.  However, when he is injured and you have to step back into the primary role.  When he gets better, there is that process of letting go all over again.  You think, "Is he ready?  Can he make the right decisions?"  Things have changed.  He is now injured.  But isn't he the same boy you watched go off to war?  This is a struggle.

When Derek was first injured, I was back in the role of primary caregiver.  I was making the decisions, because he was unable to do so.  Then he got a little better, and he was able to take part in his care, but I was still primary.  I had all of the information about his medications, surgeries, procedures, doctors, nurses, etc.  Now he is even better, but is he ready to take it himself?  Can he remember all of the information necessary? 

He always had control of his own room as to who visited and when.  Now he is making the medical decisions, but I am there to voice my concerns and questions and to help guide him  

It's hard to let go.  It's hard to give him that control.  It is in my nature to want to take care of him and protect him.  I saw how sick and fragile he was, and I am afraid that he will push it an hurt himself again.  He is so impulsive!  "I want it, I want it now, I will not wait."  I am afraid that this will get him hurt.... again.

I also have reservations right now because I feel that my questions and concerns are being "pooh poohed."  I ask questions of his PT and I get round about, fluffy answers.  She doesn't address my concerns.  Dr. Kim is great at addressing my concerns, and so is Dr. Sam, the new resident.  I like the OT and how he addresses my concerns.  Derek gets aggravated with me because he wants me to let it go, but I cannot.  I need the answers so that I can relax.  I am already not sleeping at night, and I have so many concerns about life in general.  The least they can do is address my concerns and put my fears to rest.

So, what did I do? I complained.  I voiced my concerns loud and strong today.  I had voiced them before, but nothing came of it.  Today, I did not shut up until I had action.  We are supposed to have a meeting on Monday to address the criteria for outpatient, Derek's progress, etc.  My only concern with this is that Dr. Kim is away.  She knows Derek better than anyone else who is presently on his service. I wish Dr. Perdue could be there, or at least Diego or Bograd.  The doctors who are here now are not Derek's primary doctors.  He has had so much going on,   I would feel more comfortable if at least one doctor who has been on Derek's case from the beginning was there for this meeting.  We will see how it goes.

Derek had hoped to get his colosomy reversed before he goes outpatient, but that is not going to happen.  They need him to be more stabile and secure before that happens.  Given his long history of abdominal difficulties, this calms me.  I am glad that they are being cautious.

We had wanted to go to dinner and a movie tonight, since I didn't see anyone to sign up for the Aleethia dinner, but Derek was not up for it.  Maybe tomorrow!

Some amazing news today is the phosphate level is down to 3!  It had been 7, which is very dangerous.  Now that it is 3, super normal level, and has been good for a while, there is no more low phosphate diet!  Woot!  We told him it wouldn't be forever.  We are not going to let him go crazy with cookies, soda, candy, etc., because we don't want it to get out of control again, AND it's just not healthy.  Derek will have to watch his weight for the rest of his life.  We were told that extra weight will make it harder for him to transfer and walk on his prosthetics.

Another bit of good news is he is cleared for weight bearing on the stump and can be molded for his prosthetics!  We are closer to those first steps!

And Derek has been in rare form.   His little buddy is with him for the weekend, his little brother Sean.  They are having movie nights and hanging out together.  His nurse came in tonight, and he tried ot impress her with some Spanish.  He said, "I'm umero numno!"  He meant to say, "I'm numero uno!"  We had a good laugh over that.

So we continue to heal.  We continue to walk beside Derek as he climbs to glory.  He is making it.  He will not give up.

Thursday, January 19, 2012


I finally ventured away from the hospital.  I was told it was good for me to take a mental health break.  Not so much.  I was so worried about what was happening back in Bethesda.  I spent a long time on the phone with Derek and others just catching up while I was away.

I'm in a quandry.  I really want to be here in Bethesda because I feel that Derek still needs me to help him heal, and I want to be there when he takes his first steps.  They are a couple of weeks away.  He has his liner, and we are hoping he will get molded for his prosthetics in the next few days.  I've watched him through all of the hell, and now I want to celebrate the awesome!  He is also being pinned with his purple heart in the next two weeks.  I will not miss that ceremony.   On the other hand, I am missing my other children and I know they need me, too.  I want to be there for them.  I've never been away from them, and I am missing the entire school year!  It's the hardest thing I've ever done.  This is why I cannot sleep at night.  I have not had a full night's sleep in.... well, a couple of months.  It has been really bad the last two weeks.

Mental health break?  I think not.  This whole thing is taxing and draining.  No matter where I am, I feel guilty about not being in the other place.  It's hard to keep being strong all the time, but when you do not have a safe place to fall, it's all you can do.

Being in Parsippany again was..... odd.  SO much has changed in the last six months.  Blockbuster closed, renovations to other stores were completed, and more.  I saw my neighbor, who greeted me warmly.  I saw Jessica in Quick Chek.  She is so sweet.  Sean and I also stopped by All Saints Academy, where he went to school for 7th and 8th grade, and who have been so supportive of us this past couple of months.  Judy, the principal is wonderful.  And Sean loved his history teacher, Ms. Lardiere.  They greeted us with real, tight hugs.

Sitting in my own house felt weird.  My kitties were excited to see me, and I guess my kiddies as well.  Kellina and Sean were happy to be able to spend two nights in the house again.  Ryan stayed at my sisters because his stuff was there, and he said it was easier.  The three of them are living with my sister while I am down here.  I know it's hard of them, but they are troopers.

Now Sean is back with me for a couple of days, visiting with his big brother as a birthday treat.  He's 15 already.  Wow.  My baby is almost grown up.

I flew home on Tuesday courtesy of Hero Miles.  HM is part of the Fisher House Foundation.  People donate money and unused airline miles so that wounded warriors and  can fly free of charge.  It is a wonderful service.  Without it, I never would have been able to afford to fly home or get Sean back to Jersey after this weekend. 

I drove back to Bethesda today with Derek's wheelchair accessible van.  The wonderful Rupple's donated the van to Derek.  It drives beautifully.  I tried to register it with DMV yesterday, and they told me I needed my brother-in-law to be there.  I finally convinced them I had to do it without him, and they sent me away with a form for him to sign.  So, I went back today and got it done.  Now that we have the van down here, we can get out more!  If the doc allows us.  The new resident was hesitant to let us out on pass.  But we've been out several times already, so Dr. Kim fixed it.  But now she is away for two weeks.  Makes. Me. Nervous.  His primary doctor, the one who knows him the best, is gone and we have a new doctor who doesn't know him that well.  Ugh.

Sean is flying home on Monday, but he forgot his ID, so we are having it FedExed to us.  Aggravating.

We did get to go out to dinner for Sean's 15th birthday!  My sister, her kids, our Dad, and my 4 went to dinner at Ihop.  We missed Derek and Krystina and Brian.  My brother-in-law was working. 

While I was away, Derek rocked it out in the Matc.  He has been transferring with one arm assisting himself, and he flipped himself over in bed to pet Willie the service pup.  He also started practicing getting to the toilet with the hopes of getting the colostomy reversed.  I hope his internal injuries are not so bad that he can get this done.  He wants to do it before he goes outpatient.  I really hope he can.  It will do so much for his mental well being.

And Derek had the stitiches removed from his arm.  Dr. Dimples did it!  Haven't seen him in a while.

What is still concerning are the boils.  He has two deep holes in his hip.  They are about 3 cm deep.  The explanation is that these are pockets of infection finally making their way out of his body.  I just want them to heal and stop erupting!  They look so painful.  Derek has been through so much.  It's time to end this and move ahead!

He is trying to get off the IV pushes of pain meds.  We had talked about switching to a longer acting pain med, but there seems to be a miscommunication about it.  I will clear it with Sam tomorrow.  I would love to see his pain better controlled.

The cutest part of tonight was Dr. Diego.  I had to bring back Jersey bagels.  I texted him that we had arrived, and he ran into the room to grab some bagels.  Love that kid.  I sent some home with him. He better share them with his beautiful wife!

I also brought back Irish chocolate and cookies from Ireland, courtesy of Eddie Hansberry of the Parsippany Deli.  Hey all you Jersey folks, if you are in the area, the Parsippany Deli is on Parsippany Road in Parsippany.  Love it.  The food is great and it has Irish imports!  The Cadbury chocolate is my favorite.  It just can't compare to the American Cadbury.  So much better.  It has ruined me for American chocolate.  Tonight, the nurses were loving those cookies.  Thanks, Eddie!

So, it was great to get home for a couple of days, but it made me so nervous.  I won't be heading back any time soon.  Not until Derek is further in his recovery.  I almost had to go back next week for jury duty, but I fixed it with a phone call.  I was afraid I would have to take West up on his "threat" for involuntary hospitalization.  Sometimes I seriously think he wants to lock me up!  And sometimes I really want to take him up on it!

So, that's all the news that's fit to print.  It was a whirlwind few days.  I'm glad I got to go home, but as nervous as it made me, I will wait a while before doing it again. 

We are getting through and climbing to glory!  No matter what struggles you have in your life, keep going.  Don't give up.  And don't compare your struggles to someone else's.  It's all relative.  We all have hurdles that we have to conquer, stress to defeat, trials to overcome.  I look around sometimes and think that I could never handle what someone else is dealing with.  And I have people say that to me all the time, that they could never deal with what happened to Derek.  I believe that we all have struggles, and we are usually given no more than we can handle.  Sometimes, I think God screwed up with me and gave me a lot more than I can handle, but I always make it through somehow.  When this journey feels so totally overwhelming that I want to take West up on his threat, I fake it until I get through the day, and then it doesn't seem as bad.  Right now, I feel like I have dozens of plates spinning on top of poles, and I am running around like crazy trying to keep them all in the air.  I am so afraid one will crash down.  But I will make it through.... eventually.

God bless.  Climb to glory!

Saturday, January 14, 2012

New Year's Resolutions

Have you made any New Years Resolutions?  If so, how many are still in play and on their missions?  How many have been completely retired and sent to the Rear Detachment Squad?  How many are in danger of being sent to the Rear D before the month's end?

I try not to make new year resolutions, because I know life will take over and I won't do it.

So, this year I decided what I am going to do to make life better.

1.  Get Derek to outpatient.

2.  Find my dream job.

3.  Remember to live, love and laugh every day, even when the day feels overwhelming and like it is going down the toilet fast.

4.  Remember who are the most important people in my life.

5.  Not let others bring me down.  I am only responsible for my own reactions, actions and feelings.

6.  Pray more.

7.  Remember that when I don't feel it, fake it.  I mean this particularly for strength and courage. 

8.  Get my book finished.  Even if it is never published, I want to finish it for me.  I've been working on a story for several years now.  It's time.

So far, I'm still on track to keep them.  Derek is getting better all the time.  Slowly but surely!  His arm is healing steadily after the surgery.  The movement in his fingers is slowly increasing as each day dawns.  He will beat those odds.

Quiet weekend as Derek continues to heal.  His brother will be here next weekend, so it will be anything BUT quiet.  We are going to enjoy the peace and quiet of this weekend, even though sometimes we go a little stir crazy.  It is NOT fun to sit in the hospital room all day, every day, but Krystina and I are committed to Derek's recovery and will be there as long as it takes.  Hopefully, we will have Derek's van down here next weekend so we can get out of the hospital without worrying about calling a cab!

And we finally have internet on the 4th floor!  I mentioned it to everyone who came in, and we finally have it!  I don't know if my bitching had anything to do with getting it, and I don't care.  We've got it now.  At least I can get more done during the day instead of the limited hour or two I have at night.  Phone calls are still a problem, though.  We spend a couple of hours in the Matc where there is no cell service, and the constant stream of visitors, doctors, medical teams, army support staff, etc. keeps that revolving door busy and makes it impossible to make a phone call!  I have been on the phone a couple of times and had to hang up abruptly because of another interruption, so I give up.  Texting and email will have to do for now.

Thank you all for the continuing support!  If you have not already done so, come join us at www.facebook.com/teamderekmccconnell.  We would love to have you!

Climb to glory!

Wednesday, January 11, 2012

Calling a Code on Mom

Derek is continuing to amaze his surgeons with the progress he is making with his hand.  We were told today that he is beating the odds.  We already knew that.  He was given less than a 50% chance of living when he went septic, and it was lower when he was first injured, and he's still here!

He is now wearing regular shorts, instead of his adaptive shorts, or "stripper" shorts as he called them.  There are non-profits who take shorts, pants and shirts and adapt them so that our wounded have an easier time wearing clothing.  With IVs, injured limbs, x-fixes, etc. they cannot get on regular clothing.  These organizations cut along the seam and insert velcro so that they are easier to get on and off.  Until yesterday, Derek was only wearing adaptive shorts.  He is so pleased with himself.

Derek returned to the Matc today for the first time after his arm surgery.  He cannot weight bear on the right arm for another 2.5 weeks, but he can do range of motion and stretching in his fingers, and he can weight bear on his elbow.  He was able to transfer using just his elbow.  Unfortunately, he got himself yelled at for not waiting for the nurse or corpsman when he returned.  He pulled his chair up to the bed and simply started to hop up.  He was told to always have someone standing there who can help him in case of a problem.  Does he listen?

But he listened to Dr. West!  He deserves a beating for telling Derek about the code they call for a combative or disruptive patient or family member.  I don't know if the colors they use are supposed to be made public; therefore, I will call this a "Code Periwinkle," so that I don't give out sensitive information.   Derek yelled it all night.  Thank God the nurses like me and know Derek.  If not, I think I would have been carted out last night.  And all I did was sit in my chair in the corner.

Last night, Derek was on a roll.  Krystina was rubbing cocoa butter into his scars in an attempt to soften them.  When she got to his lower back near his shorts, she snapped his shorts, and he yelled out, "Help!  Rape!  I need an adult!"  Of course, this just made her do it more and more.  Then to annoy me, he started yelling, "Code Periwinkle!  Help!  No, Mom!  No!  Don't rape me!  I don't want to ride the pony!"  Before anyone gets upset, he is not making light of real issues.  He is just having fun with us and doing his best to embarass me and get attention.  One of the nurses walked in and asked him if he was really calling a Code Periwinkle on his mother, and when he nodded, she laughed and walked out!

The best was today.  Corey the Corpsman left stuff on the bed, after I spent hours organizing and cleaning that room out.  I "yelled" at him for it, and his response, "Wow.  I'm going to go draft the commitment papers now for your nice little room on the 7th floor (inpatient psyche), and then I'm going to get a nurse to sign off on it."

Two minutes later, one of the nurses walked in with two syringes.  She asked, "Which one is giving you trouble?"

Derek replied, "The top one," and pointed at me.

She turned to get gloves, and Krystina and I looked at each other like, "What the hell?!"  Krystina hid under her blanket.

She came in to put something in Derek's PICC line to get it moving again, but the set up was just too perfect given what Corey said.  Derek wasn't actually pointing at me, he was holding up his PICC line.  We had a good laugh about it.

Some people walk by the room and look at us strange because we are laughing and joking around.  I'm sorry if we bother you.  Not really, but I needed to say it.  We are dealing with this tragedy the best we know how.  It could have been a lot worse.  Derek said today that if he could go back and change what happened, he doesn't think that he would, because he thinks a lot of opportunities will open up for him.

Right now, he wants to open up an antique/pawn shop, be an extreme couponer, and stock pile for the zombie apocalypse.

And big thank you to one of the American Legion posts from Maryland.  They came in and donated $2,000.00 to Derek.  What a great group of guys!

So, that's all the news that's fit to print!

Saw this on facebook, and it fits Derek's journey right now. 
Keep climbing! Don't stop! Climb to glory!

Monday, January 9, 2012

A Mom's Journey

We raise our sons to go off and make lives of their own. Once we ship them out to basic training, we expect that they are "out of the nest." But they never stop being your baby.  I last conversed with Derek a couple of hours before his injury on July 23, 2011.  My last words to him were, "Be safe.  Love you."  When I next saw him on July 29, 2011, he was yellow, in renal failure, battered and broken, and could not breathe on his own.  Derek's injuries are a left hip disartic, right AKA, limb salvage on the right arm, blast wounds that reached stage 4, and pelvic, jaw and skull fractures, as well as internal injuries. He was riddled with infections that caused him to turn septic.  We spent 50 days in the ICU and almost lost him several times.  When he was able to speak, finally, after several weeks, one of the first things he said to me was, "I'm sorry.  I never meant for this to happen."
I have three teenagers in high school, Kellina (17) a senior, Ryan (17) a junior, and Sean (15) a freshman, who are living with my sister while I attend to Derek.  They had to leave their home and their pets in the care of my father and move to my sister's house.  We have been inpatient for over 175 days and do not yet have a date for discharge.  As a Mom, I have to juggle these competing interests and do what is best for all of my children.  It pains my heart to leave my other children, but right now, I am needed here, and my other children understand.  Derek needs me to juggle doctors, medications, appointments, etc.; he needs his fiancee Krystina to handle his personal needs, such as meals, laundry, grooming, showering, and snuggling; and he himself needs to concentrate on healing.  Together, the three of us have what would be a very difficult journey for one or two, handled quite nicely by dividing up the responsibilities.  The hardest thing is not being there to help my children with their homework, talk to my daughter about high school drama, or just to sit and eat dinner together as a family, something I insisted on every single night.

In the hospital, one thing that has been difficult is that a lot of the programs are geared towards spouses and we moms are the forgotten.  Many moms come and stay with their children for the entire time.  We leave behind homes, pets, children, jobs, bills, entire lives.  Many of us moms either have to leave our jobs or lose our jobs as a result of being gone "too long."  On top of the stress of seeing our children struggle, we have to deal with being unemployed in a bad economy.  The programs here that might help us find jobs have been limited to spouses only.  Hopefully, that is starting to open up.  A lot of the financial support from non-profits are limited to direct dependants of the servicemember, a/k/a not moms.

It does not matter to us whether there is any program for moms.  As a Mom, I will be here until Derek takes his first steps, a milestone we are all anxiously anticipating.  This is where my life has taken me, and until I know my child is well on his way to recovery, I will be by his side.

Derek is continuing to heal after surgery on Friday.  He didn't go to the Matc today because his arm was still a little too sore.  He is hoping for tomorrow, but he does not want to push it.  So, we just hung out today and let Derek heal.  It's the same thing we did all weekend.

The highlight of our weekend was the visit from our two favorite residents, Diego and Ben!  I think Diego likes to visit because we make him laugh.  Derek's comment to him today, which I think Derek meant as a compliment, was, "I'd rather have a doctor who makes me laugh than a good doctor."  Really, Derek?  But Diego does make a laugh....a lot.

A troubling thing that happened was when someone from a non-profit was talking to Derek about where he wants to live in the future.  He told Derek that he might want to live in New Jersey, but it was not going to be possible.  When I commented that his entire family and most of his friends were in NJ, he said, "Well, ma'am, that might be, but he is going to need doctors and nurses in his life for a long time.  He has to live close to a Vet Polytrauma center, and there isn't one in New Jersey."  Listen, jerk, do not try to act like you know more than his doctors and can push me around and tell me what to do!  It won't end well for you.  He will also need the love and support of his family as he lives this new normal, and New Jersey might not have a polytrauma VET hospital, but there are plenty of polytrauma centers.  Also, we are only a few hours from Walter Reed Bethesda and can get him down here at least once a year for a check up.  I immediately consulted with one of our favorite nurses, Katie, and called for Derek's doctors to come and talk to us about this.  NO ONE in this entire process has ever told us that Derek was restricted as to where he could live in the future.  His nurses and doctors all confirmed that Derek's choice of where to live was his own.  If he wanted to live in Timbucktu, arrangements would be made for him.  Next time this man comes to pay a visit, he will get an ear full!  My concern is that he is going to say that to an unknowing young wounded warrior and his wife and they will believe him!

So, tomorrow it is off to the Matc, hopefully, and a dressing change and new splint for the arm.  One more step ahead. 

Keep on going and don't let anyone get you down.  If someone gives you information that just doesn't sound right, ask questions.  Ask a lot of questions.  Don't just take "no" for an answer, and do not accept some ridiculous reason for doing something that just doesn't feel right.  Get to the bottom of the truth so you can have all information you need in order to make an informed decision.  They might purport to be the "experts," but even they can give wrong information.  The man giving us information today is not medical.  He is not even a wounded warrior.  He is just someone who works at a non-profit and gives out information like he knows what he is talking about.  Sorry, bud.  I'm smarter than to just accept that drivel.

Hope you 2012 is going strong and you are making progress.  We have had a lot of stress so far in 2012, but we are making progress, as well.  Derek's first transfer from the chair to the bed was last week, and the hand surgery is a major step forward. 

Keep on going!  Never give up!  Never give in!  Fight for your dreams.  Fight for what you know in your heart is right.  Climb to glory, everyone.  We'll meet you at the top.  We'll be the ones waiving the New Jersey flag along with our Army flag and pointing the way towards Derek's home in NEW JERSEY!  Army strong!  Jersey fierce.  Standing there at the top will be Determined Derek, Mighty Mom and Kourageous Krystina.  Yes, I know.....cheesy.  But we will be there. 

We will be cheering you on as you make the climb, either ahead of us, beside us, or behind us.  We are all the same team, whether we be Army, Navy, AirForce, Marines, National Guard, or Coast Guard.  If you are struggling in this new normal, or even if you are strugggling with something in life, join us and Climb to Glory!!!

Friday, January 6, 2012

A Work in Progress

We are on a long, hard journey.  No one ever said the road of the wounded warrior would be easy.  The problem is, most Americans are oblivious to this journey.  They are oblivious to this part of the very real war that is going on in our world right now and affecting our young men and women every day.  These injuries that they are receiving will continue to affect them for the rest of their lives.  And they not only affect the warrior, they affect their families and friends, as well.

When Derek and I started this journey, I immediately posted in the military moms' pages on facebook, and my friend requests soared.  I could not believe the amount of support and encouragement I received from that community of moms.  I was living the nightmare they all dreaded.  I then met and befriended many wounded warrior wives, mothers and girlfriends, and with them, we have a wonderful support group.  I knew one wounded warrior mom before this, and she was a wealth of information and support for me that very first weekend.

But the first stage of this journey has already taken a lot longer than we ever expected.  Derek was a lot more injured than we could have ever believed.  He fought through it.  He climbed that mountain.  It is still a work in progress, but he is doing it.  His achievements and his list of firsts is getting progressively longer.

I posted on my facebook page yesterday another major first for Derek.  In a few hours, there were 100 likes and over 35 comments.  This support had Derek smiling and so happy.

At the Matc, I asked Kerry and Joe to work with Derek on transferring without using his hand, because for three weeks after the surgery, he will be non-weight bearing on that right hand.  He rocked it.  Then Kerry had the idea to bring Derek back to his room and try to transfer from his chair to his bed.  Derek has a specialty bed for his wounds, and his doctor says he is not quite ready for a regular bed.  This makes transfers a little more difficult.  Really?

Well, he ninja rolled!  Derek was out of that chair and onto the bed and back into the chair again... all by himself!  Woot!  It was awesome!  Kerry and I cheered and screamed and his nurse came running thinking something was wrong.  So, he showed her!  High fives all around.

Dr. N came and talked to us about the plan for surgery on Friday.  We really are impressed with him.

And Bograd is back!  I got my hug.  I now have my three favorite residents in the same hospital!  Although, this new PM&R res is quickly catching up.  We've only known him four days, but he is wonderful.  So attentive.

Yesterday, Derek woke up with a new wrist band.  He told Joe in the Matc that he was a "moderate fail risk."  Joe asked him if there was a test that maybe he was asleep for and that's why he failed!  The band actually says, "moderate FALL risk."  Oh, Derek.

I spent the night with him, because I knew he was anxious over the surgery, and because getting up at 05:00 and rushing to the hosptial to get to PACU at 05:30 just didn't appeal to me.  It was easier to spend the night, even on those horribly uncomfortable chair bed things they give us in the rooms.

Derek's anxiety had been lessened by talking to his doctors.  We had confidence in Dr. N, and Dr. West reminded that he is not as sick this time as he was two months ago when he had his last surgery.  His kidneys are better, his lungs are better, everything is so much better.  He was still concerned about the blood pressure issues, but there was no need, because his body just needed a rest from surgery.  He had no blood pressure issues during the surgery.

Dr. N is pleased with the surgery, so we are too.  There was a 9.5 cm deficit in the ulnar nerve.  They did a nerve graft and a bone graft with cadaver parts.  Over the next six months, we will see how the nerve regenerates and repairs itself in its new tract.  After that, depending on how the hand in functioning, Dr. N will look into tendon transfer for more functionality.  It's a work in progress.

It was a very long surgery, over four hours, and Derek woke up in pain and wiped out from the anesthetic.  He slept all day, and even apologized to me tonight for sleeping all day.  No apologies necessary.

The most aggravating part of the day was a visit from the federal recovery agent.  We have told her before, that if we need her, we will call.  Krystina told her once, Derek told her once, and I told her twice.  Why did she walk in today?  To argue with me once again that she disagrees with my decision about not needing her.  Two visits ago, she walked in unannounced and just sat down.  She explained what she was there to do.  We have a Nurse Case Manager, the WTB, the AW2, etc., all of which does exactly what she said she did.  She asked me if I had done the social security application.  I was filling it out when she walked in.  She asked if the TGLI paperwork had been done.  I told her we had an appointment for that the next day.  She asked about other paperwork and applications..... all done.  And I need her, why?  I've spoken to so many other wounded warriors and none of them have someone like her.  We don't need her.  I've reviewed her paperwork.  It's not necessary, but I told her if I needed anything, I would call her.  She won't quit.

If I was going to call her for anything, I will never do it now after today's visit.  She stood there arguing with me that I needed her.  She said she would just come talk to Derek when I was not there, then.  I told her that Derek wanted me present for all meetings, because his short term memory is not good right now, and he has asked me to handle all paperwork, applications, medical records, etc., and I have the prior records, so if that meeting was going to talk place, I would have to be there.  She said no, she would just talk to Derek.  Does she even listen?  When I told her I was too stressed that day to deal with her because Derek was in surgery, in walked Dr. N with the post-surgery report.  Thank you, God!  I told her she had to leave so I could talk to the doctor.  After she left, he asked me what he walked in on, and I said, "Just some lady who keeps coming back to argue with me that we need her."  She walked back in and said, "I hate to disagree but. . . "  I yelled at her to get out!  She eavesdropped on a private conversation with a doctor!  Where in her delusional brain matter could she ever have thought it okay to interrupt a conversation with a doctor to which she never should have been privvy?  I intend to send an email to her supervisor. 

I spoke with Derek's team afterwards, and they were concerned with her behavior and how she is harassing us when we said "No."  She was asked not to come back until we call her.  'nuff said.  If we miss out on something, that's our problem, not hers.  If she is so concerned that we might be making the wrong decision, she should talk to someone on Derek's behalf and quit harassing us!  One of the doctors wants to be paged if she shows up again and he will take care of her.

I really needed that after the week I had and with Derek in surgery.  But, thank God the surgery was successful and we are progressing.

A major big thank you for the following wonderful people who sent care packages, cards, letters, treats, goodies, etc.  They all arrived today, a wonderful day to keep our mind off of things while waiting for Derek to get out of the OR and then to finally wake up.  Once he is more alert, he will read all of the cards and letters.
     So, thank you so much to: 
                   Erin McGahuey
                   Jodi Brogran and her children, especially Christopher and Megan who donated part of their allowance
                  The students of All Saints Academy, Parsippany
                  Leanne and SSGT Weatherford
                  Stephanie Hadley
                  Jody Harding
                 Girl Scout Troop 20308
                 Wolf Pack 7090, AZ
I hope i didn't miss anyone......

Major kudos today to Dr. Nanos, our wonderful hand surgeon, Dr. Howard for that wonderful flap that closed the hole in the arm back in October and allowed this surgery to proceed today, and Katie our awesome charge nurse who ran down and got me a sandwich when I was ready to faint with hunger but didn't want to leave in case I missed the call that he was out of surgery or the post-op visit with the doc.

Isn't life simply a work in progress?  We create something wonderful and then go on to our next project, to create something else, thus always having a work in project.  Whether this be an arts and crafts project you enjoy, a special project at work, the home improvements of your dreams, raising your children, working out and sculpting your body, writing a novel, or whatever turns the corners of your lips up into a big smile and warms your heart.

Derek is a work in progress.  His arm is in the process of accepting the new nerve and repairing the pathway around it so the nerve can become a part of his body, as well as accepting the new bone graft.  Then he will be back to OT and PT for range of motion, stretching, strengthening, etc.  Bottom line.... we will get him there.  We have realistic expectations for the hand, and we have faith in Dr. Nanos' ability.

Keep going, keep climbing, never give up, never give in.  You will never reach the top if you quit halfway there.  Climb to glory! 

And remember our men and women in the military, serving to protect our way of life, away from family and friends, in harm's way, afraid, lonely, hot, cold, tired, hungry, but never giving up as long as there is one American counting on him/her.  And remember those who were wounded defending this country and our people so that we might live free.  Their lives are forever changed as a result of the love they had for their country and their desire to want to do something more.  Pray for them.  Remember them.  Tell their stories.  Don't let them be forgotten.

God bless you.

Thursday, January 5, 2012

By The Numbers

As of January 6, 2012, the following is Derek's hospital stay by the numbers.....

Days in the hospital - 173 days

Days at NNMC/WRNMMC - 167 days

Surgeries - 36

Procedures - 12

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

Medical teams involved over course of stay - 24
     Trauma, PM&R (Physical Medicine and Rehabilitation), Orthopedics,
     Endocrinology, Internal Medicine, Urology, Plastics, Nueropsyche,
     Infectious Disease, Gastrointerology, Hepatology, Nephrology,
     Oral Maxillofacial, Dental, Anesthesia, Radiology, Acupuncture,
     Occupational Therapy, Physical Therapy, Respiratory, Wound Care,
     Dietary, Speech Pathology and Nursing.

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 now 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, but that might depend on the service.  Attendings are supposed to stay the same.  We almost lost our attending from the PM&R team.  We were told she was being switched out.  We objected, and..... She's staying!  Continuity of care.  Besides the fact that we don't want a new resident and a new attending starting the same week because then neither one would be up-to-date on all of Derek's history and care, although one has been on the fringes for a while, we love Dr. Kim and don't want to lose her!

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 (Vice Chief of Staff, Army), Gen Franks, CSM Grippe, Gen Odierno (Chief of Staff, Army), Director of NCIS, 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. 

So, 36th surgery tomorrow.  Derek is a little nervous about it.  We all are.  But Dr. N seems to have a good handle on it.  He and his team have a plan and we have confidence in them.  So, prayers for a successful surgery and recovery of the hand.  It's frustrating to only have the use of one hand.

Good night.  God bless.  Keep climbing.  Eventually you will reach the top.  Climb to glory, baby!

Wednesday, January 4, 2012

Learning to Let Go

What a week so far.  Derek is sad that Krystina went to see her family this week, even though he understands she needs to see them, too.  Just because he understands, doesn't mean he is not sad.  It's not easy being away from someone you love.  He is also nervous about surgery Friday.  We all are.  But Dr. N seems to have a good plan in place.  He came down to the Matc to discuss it with us.  The EMG looked promising, and Dr. N is hopeful.  He is going to replace the cement spacer with a cadaver bone and take a look around to see if there is a path for the ulna nerve to regrow.  He wants to look around and see how the rest of the hand is repairing itself and what state it is in. 

He said the immediate recuperation time is three weeks, so OT and PT will be a little limited.  Derek's PT was NOT a happy girl.  She stomped her foot when I told her.  She is quite a character.  We like her.  She kids around with the guys and her whole attitude is very helpful to their well being.

Derek will not be able to bear weight on his hand or wrist for three weeks.  There will be no range of motion or stretching of the hand or wrist for three weeks.  Thereafter, regular OT and PT can resume.

The full recuperation time is about six months to two years.  After six months, another nerve study will show how much of the nerves have regrown and whether a rewiring of the tendons or muscles is necessary.  There may come a point when all that can be done will have been done, but at least Dr. N is hopeful and is trying it all.  Derek has already asked about voluntary amputation if the limb salvage is not successful.  Dr. N is hoping that his hand will be repaired enough to be a helping hand, and all efforts will be exhausted before amputation is considered.  I hope it doesn't come to that.  I really don't want to think about him losing the arm. 

An ongoing conversation this week has been nurses v. therapists (of the occupational and physical variety).  Nurses nurture and attend to all of the patient's needs.  If a patient is struggling, the nurse rushes in and helps immediately.  It is her role to make sure the patient is comfortable and wants for nothing.  If he is reaching for something, she will hand it to him.  A therapist, not so much.  A therapist is apt to move the target a little further away or make a sarcastic comment in order to egg the patient on to try harder.  The therapist will sit there and let the patient struggle until he can do it himself.  Their roles are very different.

Both want to see the patient succeed, and both celebrate when the patient can do it himself.

As a mother, I am torn.  And throughout a child's life, a mother remains torn.  No mother wants to watch her child struggle, so it is in her nature to nuture and help.  But, she also knows her child needs to learn, so she guides him and allows him a safe avenue in which to learn that which he needs.  In this situation, I need to fight my instinct to reach out and hand Derek his seat belt or help him in other ways.  He has to be independent.  I help him with things I know he cannot do with one fully functioning hand, but other than that, I have taken a lot of cues from his OT and PT and I push him to do more and more on his own.

It's hard to let go.

I am so stressed I am ready to crack.  This week has sort of pushed me over the edge.  Over the last six months I went from being with my kids every day to seeing them every few weeks, to having my son healthy and full of life to almost losing my son and watching him suffer daily, from having a wonderful job I loved to having to find a job in a terrible economy, etc.  Derek is also stressed this week, and that has not helped.  I had to set priorities, and getting Derek through this was number one.  Now that he is getting to the end of the rockiest parts, the priorities are meshing closer together, so the choices are harder to make.  They were so easy in the beginning.  Now I don't know what to do sometimes.  I just ask for guidance, but I don't feel any coming yet.

So the mountain is a little steep right now.  I've gotten over steeper climbs, and I know I'll get past this one, too.  Sometimes, during the steepest parts, when it is especially rocky, it doesn't feel like I'll ever get over that rock and onto the next one, but somehow I do.  I just keep climbing, and before I know it, I'm onto the next challenge.  So, keep going.  You'll make it to the top eventually, too.  And then there will be another mountain, representing another of life's challenges for you to conquer.  That's life.  That's what makes living an adventure.  So, keep climbing.  Never give up.  Never give in.  Tell that mountain who's the boss.  Own it.  Climb to freaking glory!

Tuesday, January 3, 2012

Celebrating Firsts

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, etc.  He has not yet had his first steps, but he will, and we will be there to cheer him on when he does!

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)

So, like a child again, we are back to celebrating firsts.  There will be plenty of other firsts to celebrate, and like a child, we have traded in the diaper bag for medical supplies.  The last couple of years, we used to simply grab our pocketbooks and run out the door, but now Krystina and I have to make sure the protector is on the PICC, the extra colostomy bags and supplies and urinal are in the backpack, along with a change of clothing, and if we are going on pass, that we have his medication.  Krystina and I make a good team.  We have split up the work between us and it all gets done.   

Today, Derek didn't want to get his ass out of bed and go to the Matc.  I had to be a general and get his nurse and a corpsman to just pick him up and put him in his wheelchair.  I did the same thing yesterday with a shower.  He is moping because Krystina is not here, but it is worse because he is also nervous about surgery on Friday.  It's a double whammy this week, so I have to step it up and kick his ass double time.  Once he got to the Matc, he had an awesome workout and his PT raved about him in her note in the computer.  He picked up a whole bunch of blocks with his injured hand, rolled all over on his own, sat up on his own, transferred in no time flat, and pushed himself up!  It was a great session.

Afterwards, we had a very special visitor!

Bobbie is a beauty! 

So, Matc tomorrow and Thursday and then surgery Friday.  Should be a relatively quiet week besides that.

Good night and God bless.  Climb to glory.  Don't stop until you reach the top.  The view is gorgeous from up there!