Monday, August 15, 2011

A Couple Steps Forward and Broken Expectations

Derek did not have dialysis today, but he did have fluid reduction, called CRRT, all night long.  He received several pints of blood and platelets, and is still off the BP meds.  Antibiotics continue for the damn infections.  his white cell count hovers between 15 and 19, but at least it is down from 34 last Monday!
Back to the OR today.  An off day for Derek, but they decided since it was a slow day, they wanted to attempt the tracheostomy.  They couldn't do it as planned on Monday, because he crashed and we almost lost him.  On Wednesday, he still was not stable enough, the surgery was too long, and there were bleeding issues.  On Friday, the bleeding issues continued, and due to the length of the surgery already, they ended it.

So they decided that they would simply do the trach today and then go tomorrow or Tuesday for the washout of the arm and the urology stuff.  However, once ortho heard he was going to be there, they jumped on board and decided to do the arm today, but the trach team wouldn't let them go first.  Urology was too slow to get into today's surgery. so they have to wait until Tuesday or Wednesday.

Bottom line - Derek received the trach today!  AND a shave!  No more red beard!  Yay!  He looked kind of strange, but still kissably adorable, with the blond hair and red beard.  Before the surgery, they couldn't get the stache or the side burns, so he returned looking like a 70's porn star.  Oh, Derek.

It's strange the things we now celebrate.  This new normal sucks.  I miss the things I used to stress about, most of which almost seem petty now, like whether the kids changed the cats' boxes, cleaned their rooms, did the dishes, folded their laundry, or whether I will get home in time to watch the beginning of a favorite TV show.  I haven't gotten to watch TV in over two weeks, except for a few minutes here and there, and I really have no desire.

Some of the things I stressed about are more of a stressor today.  I still have to worry about paying my mortgage and utilites and supporting my children with no child support and only my income, which I do not know how long will continue because I am not working and do not know when I can expect to return.

We were told Friday that due to the severity of Derek's injuries, it will be a very long time before we can expect him to graduate to the fifth floor.  It's time for a sit down with my firm.
When I packed to come down here, I had no idea what to expect.  I packed two week's worth of clothing, and I expected to return home after that and come down on the weekends to be with Derek.  I knew that his legs were gone, but the extent of his other injuries were unknown to me at that time.  I also figured he would be in the hospital and starting PT, and that he would be getting good care, and wouldn't need such one-on-one, hands on time with me.  I really thought that weekly visits would be all he would want, because Derek is very independent. 

Nothing prepared me for the night I first saw him.  I will never get that picture out of my head.  Never get that horrific feeling off my heart.

He and I have a very close relationship, but he is not a mama's boy.  When he was ill and in the hospital before, he always clung to me and wanted me by his side, but when he was well, he wanted me to let him fly.  At 14, Derek almost died from an encapsulated bowel.  While in the hospital, he never wanted me to leave.  I slept by his bed, showered in the nurse's locker room, bought my food in the cafeteria, ate by his bedside.  As soon as he was released and in his own bed at home, he wanted me out of his room, to only return once in a while to check on him.  Once he was on his feet, he didn't need me except for meals.  That was Derek. Strong, a fighter.  Nothing ever got him down.  I expected the same thing here.
Hopefully we will get there, but the doctors say it won't be any time soon.

We were visited on Friday by Sgt. Archie and Amy O'Connor.  Sgt. Archie is a therapy dog, a German Shepard, who visits the wounded warriors.  So precious.  Amy is the healthcare mediator, and she told me she usually only gets involved when the healthcare is especially complicated.  Not someone you want to meet.  She explained that Derek's care is going to be very complicated, and his recovery is going to be long and difficult.

The left leg is going to be hard to fit with a prosthetic, but not impossible.  Most with a hip disarticulation end up using their wheelchair most of the time simply for convenience.  It is easier to balance and get around.  the right leg will be easier to fit.

The right arm is heartbreaking.  Derek is so into working out and looking good.  He will need his arms and his strength to do PT and get around in his wheelchair, on his crutches, with his cain, when he eventually gets his legs, etc.  They simply don't know how much of his right arm will be of use to him.  It is still so much in the realm of the unknown.

The bone on the outside (the ulna?) has a break with an one inch missing gap.  They will put orthopedic cement in it.  But there is nerve damage on that side, and it is unknown how much use he will have.  He cannot feel his pinky,  Will it regenerate?  They do not know.  There is a deep laceration on the top of the arm that was closed and also contributed to the nerve and muscle damage.  On the bottom of the arm, there is a "shark bite."  This bite from the blast took muscle, bone and tissue and left exposed nerves and tendons that are slowly dying.  They cannot repair them now because they have to do vascular surgery and the die will strain the kidneys.  Derek has been receiving dialysis because he was in acute renal failure.  The damaged nerves, tendons and muscles at this time do not allow him to move his hand.

In order to repair the hand and give him a somewhat working hard, the doctors will need to completely rewire the hand.  This is going to mean taking nerves, tendons, muscles, blood vessles, etc from other parts of the hand where they are less essential and re-routing them to the more important parts of the fingers and hand so that he can open and close his fingers, make a fist, hold a pen, dress himself, etc.  He will have limited strength in that hand.  And the surgeries will take place over six months to a year, once the kidneys have healed enough to begin the vascular part of it.

My heart breaks for the hopes and dreams Derek had and the struggles he now faces.  I see heartbreak every day, and I try to make sense of it, and  I cannot.  Mothers and wives walking out on wounded warriors who gave all and now face life altering injuries alone, without the support of those whom they love.  Mothers breaking down sobbing because they just found out their beautiful little boy has shrapnel in his brain and the damage in so extensive that hope is all but non-existent.  Wives telling me "this isn't what I signed on for" and then getting pissed off because her husband lost a pinky and hardly ever visiting him while he lies in CCU. 

But then there are the stories that give me hope.  The soldier who was told he had a better change of "winning the lottery twice" when the bullet entered his temple and lodged in his brain stem, missing every vital part of his brain.  He was admitted Friday to CCU and graduated to the 5th floor on Saturday, walking, talking and feeling great.  The marine who knocked on death's door the night be was admitted, but who rolled by me tonight in his wheelchair smiling.  The little girls running down the hallway today and jumping onto their Daddy's wheelchair and begging for a ride. 

And there are stories that both break my heart and give me strength to go on every day.  Like the wife who is so devoted to her husband that she fights his every battle, stands by his side, advocates for his every need, and sometimes helplessly watches his body and mental clarity ride the rollar coaster that has become the unseen homefront war on terror.  She is my inspiration.

Every day I wonder whether I am strong enough to face this, to battle this, to help Derek face the demons and challenges ahead.  Sometimes I want to scream and shout and throw a massive temper tantrum.  Sometimes I want to curl up in a ball and cry.  Sometimes I want to hide under my blanket and sleep until I wake up from this nightmare.  And sometimes I want to get in my car, go back to Jersey, and pretend none of this ever happened.

One thing I do know, I will never and can never walk out on my boy as long as he needs me.  I never could.  These are my kids, and I will be with them until I take my last breath.  I know I will have to juggle a hell of a lot, but right now Derek needs me the most.  Tonight, his nurse called me to return to the hospital because he was calling for me.  I will never not heed that call.

I do not understand how any parent could ever walk away from a child, at any age, at any time.
Thank you for the continued prayers and well wishes.  This is a long journey that has only just begun.

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