100 Days in Bethesda

15 weeks ago today I received the call that changed our lives forever.  That call had a ripple effect, effecting not only my and Krystina's and our immediate family's lives (that is purposely singular), but our extended families, our friends and their families, and also the communities of Parsippany and North Caldwell, and beyond.  This has taken on a life of its own, and I am hearing from people from around the country how this has effected them.  I am humbled by it.

We have been in Bethesda for 100 days as of tomorrow.  100 days of hospitalization.  Tonight we met a man whose son was injured in October, and he sustained double amputation of his legs and has limb salvage of one arm, similar to Derek (but remember what i said about ordering that Whopper?  Everyone gets different condiments/dressings/etc. - a different collection of wounds and side effects), but he only spent two days in ICU, and he is almost ready to be discharged as an outpatient.  We have seen so many like this.  Derek was hit hard. 

These last 100 days have been trying, humbling, encouraging, heartbreaking, hysterical, tearful, etc.  We have fun the full gammet of emotions.  Most of all, these past 100 days have meant a major change for our lives.

Before that call, I was a single mom of 5, just barely making ends meet by living within my means.  I was working in a law firm where I enjoyed my job and the people with whom I worked.  How many people can honestly say they like everyone in their office or place of employment?  I did.  I felt the stress of my life from being a single mom with one son in the Navy, another son in a war zone and 3 children in high school with no child support and no help from their father, but I was doing it.  I always had the attitude that this was life and I just had to deal the hand I was dealt. 

My attitude hasn't changed even though everything else has in the past 100 days.

Mike is now home from the Navy, having finished his tour of duty.  He and my father are holding down the fort at the house and dealing with our mini-menagerie.  Their lives are turned upside down.  Mike had expected to get out of the Navy and enroll in a few college courses at county college in September before deciding where he wanted to enroll for his full-time college.  I heaped a lot of responsibility on him.

My father is 74 years old and still not over the loss of my mother only 3 years ago.  Watching his grandson go through this has torn him apart.  But he has gallantly made the trip to and from the hospital on several occasions because nothing will keep him from seeing Derek, not even his broken heart.

My sister and her husband took on the responsibility for my three high schoolers, in addition to their own three children, full-time jobs, football and tennis, and other responsibilities.  Yvette and Brian opened their hearts and their home to my three children.

My three high schoolers have had their lives completely torn asunder.  Not only did they have to see their brother lying in the ICU so close to death and hear the doctors spewing all their doom and gloom, but they left their home, pets, comforts, schedule, routine, and lost their mother for an unknown period of time.  They are wonderful.  They understand that I need to be here.  They understand that Derek's needs were greater, and that Kiki could take care of them for the time being.  But they have to be wondering when and if life will ever return to "normal."

Krystina, God love her, dropped out of school, quit her job, and left everything to come down here.  She will return to school eventually, but right now her concern is Derek.  She is a true blessing.  Derek couldn't be any luckier.  He chose wisely when he chose her, and she is blessed with....  Well, tonight he picked up his little mirror and said, "mirror mirror, on the wall, who is the most handsomest amputee of all?"  His sense of humor is amazing.

Krystina's family is dealing with the heartbreak of seeing someone they love in such a dire condition and having Krystina leave home, out of state no less, a lot sooner than expected.  There are other things with which they are dealing, but I will respect their privacy and not discuss them.

And surely Derek's life has changed.  He was so into his martial arts.  UFC, MMA.  His career goals and aspirations will all have to change now.  This is what broke my heart that first week.  But a Four Star General we met last week and saw again today was so impressed by Derek's story and his attitude that he had Derek retell it to visitors today.  As I've said before, Derek used to think if he lost even a pinky, he didn't want to live.  But when this happened, he knew he just wanted to survive, and he is intent on living life with the same quality as before.

Over the last 100 days, we have watched Derek go from a vibrant, full of life man, to a small child barely clinging to life.  He stuggled for each breath; we were so close to losing him.  He ebbed and flowed so many times in the past 15 weeks.  He stood on the threshhold, outside Death's door, but he would not walk through.  He is a fighter, and he was not ready to succomb.  He was not ready to leave.

We have battled heartbreaking loss, crushing set backs, gruesome wounds, horrific nightmares, funny but scary delusions, invasive infections, irresponsible medical staff, and bureaucracy.  But we have also had fabulous nurses, amazing doctors, superior service providers (OT, PT, some RT),  awesome corpsmen, heart warming experiences, hysterical fits of laughter, humbling episodes, and leaps of progress.  We have met some of the most amazing people I have ever had the pleasure and honor or meeting, and i will never forget them.

This has been a true roller coaster ride with highs and lows, twists and turns, and stomach clenching moments.  But like all thrill rides, it will end one day.  We will get off this crazy ride, and we will be better for the experience.

15 weeks after his injury, 100 days in the hospital, and Derek is finally on the right track.

In a few years, we will look back on all this, when the new normal has been on our life, and I hope that in reflecting on our time here I see that we left this place better for us having been part of it, and that we were part of the effort to bring this face of war on the homefront to the American people so that more people become aware of what our boys face when they get home.

No one should have to fight this fight.

Revolving Door

The hospital is no place to get some rest.  Derek's day started with a trip to radiology for an ultrasound on his liver due to high liver enzymes.  He, thankfully, slept through the entire trip down, procedure and trip back.

Diego is growing on me.  He might be able to reach the bar set by Obi and raised by Bograd by the time Derek is released to the pmnr team next week, but I like him.  He came in this morning, and rather than wake Derek, we stepped outside to talk.  He told me not to listen to the other docs if they showed up and used scary words like "dangerously high levels," because we had not yet established a baseline from which to determine that.  The scan came back fine, so we are back to watching diet and checking blood levels periodically.  Another team is going to be consulted.

And that revolving door went on all day.

Who comes in and out?

First of all the nurses are the most frequent visitors.  They not only tend to the IVs - fluids, any medications that have to be given, any problems WITHT HE IVs, etc., but they tend to the patients needs, as well.  On that same line, you have corpsmen and LPNs who take vitals and assist the patient.  We also have student nurses and nurses on orientation.

Then you have the doctors.  Derek has several different teams, and each team has an attending physician, a resident and an intern.  Some of the teams only come in once a day, but some of them need to come in a couple of times a day, or as in the case of his primary team 9trauma), several times a day.  Just rattling them off the top of my head, Derek has trauma, neuro-pysche, orthopedics, plastics, internal medicine, encrinology, and urology.  We were told today that the gastrointerologists will be consulted.

Then you have the providers.  The ones that Derek has at present are Occupational Therapy, Physical Therapy and wound care.  He used to have respiratory, but thankfully, no more trach, no more oxygen, and no more breathing problems!

You also have the military connection - WTB, AW2, finance, SFAC, social workers, liaison, squad leader, nurse case manager, etc.  Some visit daily, some weekly, all very much necessary.  i have a little beef with finance right now, which I found out is not germane to me.  I filled out my voucher for a direct deposit.  They mailed the check for my daily allowance to my home.  Doesn't do me a whole lot of good when I am here and not there.  Thank you for that. 

After that you have the regular volunteers who offer things to the patient and families.  The organizations that help out and are actually allowed in are wonderful.  They do so much good.  But, I'm sorry.  If i say I do not want something off the cart, i really do not want something off of the cart.  I do not need you to pick up the basket and come into the room when Derek is sleeping, resting, or just does not want to be disturbed and shove it under my nose and insist that i take something.  I know you are only being helpful, but it is really okay to accept my "no" as "no" and go to the next room.  And the different volunteers come by about 5 or 6 times a day.  I love seeing them around the hospital, but some of them need to accept "no, thank you."

And here are some awesome volunteers:  http://www.causes.com/causes/99991-operation-ward-57-helping-wounded-soldiers-their-families

But it should be a little easier to get in.  I know of some volunteer organizations having a harder time getting in.  I also have private individuals who want to help, like sending care packages to different guys who might have nothing, but the approval process for that is impossible!  It should be easier.  The best I can say is send it to me at the address to the right with a note to share the love, and I will do so.

You also have the visitors for the patients.  These include not only the VIPs who arrange their visits and come around prearranged, but the brass who visit while on R&R.  Chaplain Kim from Ft. Drum visited Derek today, and we are expecting the owner of one of the sports teams sometime soon.

Then there are the musicians, poets, artists, etc. that come at night to "entertain."  At the end of the day, after all of the foregoing, we just want to relax, watch TV, and enjoy each others company, not paint a bird house or be interrupted by someone asking us to paint a bird house.  And we do not want to close the door, because it is too claustrophobic.  But that's just us.  Others might love it and welcome to interaction.  Everyone is different.  So, what if the nurse, at the start of the night shift, asked if the patient would like a visit from the Music Man?  Then when he arrived, he could be given a list.  Problem solved?

So, that's our revolving door.  The worst is when a group of them all show up at once.  I stand at the door feeling like an executive assistant at a busy office!  I can fit you in at 3.  Would you care to wait?

It seems as if we are well on our way now, though.  Derek has his first workout in the inpatient physical therapy room.  He wasn't so thrilled about the 2 lb pink weights when he used to bench press 250 lbs, but he has made such wonderful progress.

God bless and climb to glory!

Progress!

Derek waited until the third month mark and then started making progress.  Last week, the flap was taken down, he was taken off of oxygen, and he was decanulated.  This week, the pelvic x-fixes were removed today, the last wound vac was removed, he was turned over to the wound care team, and they started to talk about turning him over from the trauma service to the Physical Medicine and Rehabilitation Team!  All of this is major progress.

On Sunday we will have been here 100 days.  Most of the patients are outpatients by this time.  We have watched many come and go.  Could it really be our turn?  Could we really be outpatients by Christmas?

It seems almost too good to be real.  Dere3k still has some issues with his lab work.  He needed some magnesium replaced today.  And they are doing an ultrasound of his liver due to high tryglicerides. They changed his diet to a heart healthy diet.  I looked at the doctor and asked him when that happened and if they were going to tell us about it.  He smiled with his cute dimples and said it just happened!

Had "fun' in the PACU today with a "wonderful" nurse.  I asked her name and she would not give it to me.  She told me she did not have to.  They were coming to do x-rays.  I told her to have a push ready.  She told me that he had his PCA to which I replied that it was not sufficient.  Why do I have to argue with a nurse about pain meds?  she told me it was sufficient.  I told her it had been reduced and pushes and oxy was ordered to get him off the pca, and then she tested me on the dosaged amounts!  She then asked Derek!  He had been asleep during our discourse. I had told her that he always needed a push during x-rays, turned and movement, and she said, "Derek, your MOTHER, seems to think you ALWAYS need a push during x-rays."  He nodded and said, "I do."  I then said, "just have it in your pocket in case he needs it so it is ready, please."  She told me his respirations were too slow and would not support a push at that time.  i told her then the x-rays would wait until they were ready because the wounds on his back were too raw to do the x-rays without the push.  She questioned me about them!  Seriously?!  I advised her that he had a stage one pressure ulcer and a sacral wound with stitches that were extremely painful hence the specialized bed.  During the x-rays Derek yelled out in pain.  Oh, she was such a joy.

Thank the Lord he does not have to have surgery again for a long time.

Yes, that's right.  No surgery for a while!  The next surgery will be to replace the spacer in his arm, and that is a ways from now.  He will have the hand rewired in a couple of months, if it does not come back on his own in PT and OT.  We have an awesome team for OT and PT, so if it can be done, it will be.

So, next week, Derek will be turned over to the PMNR team, hopefully, although I love our docs, and the supra pubic catheter will be removed.

Less of a patient, more of a person.  I really need to order that as a shirt for Dr. West!

And we have a real children's TV show going in our room.  We have Clifford the Big Red Dog with his adorable dimples and Go, Diego, Go!  With their baby faces, that really adds to the whole children's theme, but at least they don't look like they are 12 like some of the interns running around.  I do miss Bograd.  He would walk in and light up when he saw how much Derek was improving.  The look on his face when he saw Derek sitting in the daw room talking to another wounded warrior will be with me forever.  There was genuine joy in his eyes that day.  And the way Obi asked about Derek's progress when he was away?  They don't teach that level of caring. 

That's right.  I haven't said that we have our Obi back!  He is not on our rotation (major sad face), but he is back in Bethesda and paid us a visit the other night.  I admit that I was a little over excited when i saw him and pushed Krystina out of the way to hug him.  Sorry, honey.  I had waited too long since Derek released him from his shackles.  I do love him.

That's all for tonight.  Hopefully this weekend will be rest, relaxtion, progress, healing, and milestones.  Derek's first real shower in months is on the agenda for tomorrow!  I'd say his first shower in the 15 weeks since his injury, but he hadn't had a REAL shower since long before that!!  This is going to feel like heaven to him. 

Something so simple, so mundane, something we take for granted every single day, is going to be heaven for him.

In this season of Thanksgiving, I am thankful for all of the progress that Derek has made, continues to make, and will continue to make over the next several weeks, months, years.  God bless you, all.

Imagine

You are walking along, laughing with your buddies.  You feel the heat of the day soaking into your skin.

Then a flash.  Pain.  Nothing.

You awake to disjointed voices.  Yelling.  You try to open your eyes, but see nothing.  You try to discern what the voices are saying, but all you hear is screaming.  Is that you?  All you can feel is pain.  Inense, white hot pain.  Then nothing.

The pain invades your consciousness.  Strangers' voices are all around, pulling at you.  You cannot make out what they are saying.  You hear snippets of conversations but cannot understand what they are saying.  Hip disarticulation?  What does that mean?  You try to move, to speak, but cannot.  You fall under the cloud of unconsciousness again.

Loved ones' voices are just out of reach.  You try to respond, but cannot.  You struggle to say something, anything, but the words will not come.  You slip away again.

The fog starts to lift.  You see your loved one's worried face looking down on you.  She tries to smile.  She tells you everything will be okay.  You see the unshed tears behind the brave face.  You hear the quiver in her voice. You struggle to respond.  Is that a tube in your throat?  Why is there a tube in your throat?  You are told you cannot breathe on your own. 

You try to move and find that half of your body is gone.  The pain envelops you like a tornado lifting a mobile home into its arms.  You try to yell out, but the scream won't come.


Strangers are all around you, tending to your every need.  You cannot feed yourself, dress yourself, even put on chapstick.  You cannot recall what happened, what caused you to lie there, unable to move, unable to tend to yourself.

The daily needs you used to take for granted, are now major milestones to be relearned with the assistance of the wonderful OT AND PT staff - dressing, showering, brushing your teeth, going to the bathroom, putting on chapstick. 

This is the life that awaits the 18 yr old, 19 yr old, 22 yr old, 29 yr old, etc. wounded warriors.  It is heartbreaking, but it is also heartrendering.  They have such spirit and drive.  Nothing keeps them down.  I watched a kid who had been an inpatient for over 400 days wheel himself out of the hospital today to the cheers of the staff and other patients.  His mother beemed with pride. 

Derek has been in the hospital for 96 days today.  He is the longest inpatient at present.  We have watched warriors come in after us and leave for outpatient housing, and we stay on.  We are getting closer.  Krystina and I have made some major sacrifices to get Derek to where he is today. I do not regret those sacrifices and neither does she.  They were made out of love.  Our families have also made sacrifices.  This is family, and this is where we need to be.

I have met some wonderful people on this journey, people I never would have met otherwise.  I am thankful for this journey.  I hope that I am able to bring a little of this world to the American people, because the face of wounded warrior needs to be seen.  Their struggle needs to be known.

The life after the war must be told.  The PTSD, the nightmares, the struggles.  The rehabilitation.  This is the face of war.

Teary Halloween

Happy Halloween!  My children in NJ actually had a snow day today.  Parts of NJ have no power, trees are down, and there are dangerous areas as a result of the snow storm this past weekend.  Many towns have postponed trick or treating until Friday or Saturday.  Stay safe out there!

At the hospital, we had a puppy parade!  Krystina put on her devil ears, and I wore a witch's hat.  Nothing unusual for us.  The dogs come around most days, usually in their uniforms, not cute costumes like today, I'm a witch on a daily basis, and Krystina is always a little devil!

Derek got aggravated today by all of the visitors, especially since they start so early in the morning.  It really does get overwhelming.  It's a constant stream of doctors, nurses, Red Cross, VIPs, etc.  We need a revolving door and an appointment book!  I do wish that we had a schedule.  For example, we never know what time OT, PT and certain doctors are coming.  If we did, it would make things a lot easier.  Just my humble opinion.

I got to talk to the ortho attending today about the x-fixes coming out on Thursday.  Tomorrow is a procedure to exchange the wound vac and change the dressings on some of the wounds.

But today was a sad day.  Dr. Bograd finished his trauma rotation.  He starts his new rotation in another hospital tomorrow.  I have barely shed a tear this entire journey.  In the beginning, I did.  Saturday morning I was frustrated enough to shed a few.  Today, I teared up saying good-bye to this wonderful man.  He is so good that if I could, I would choose him as the personal doctor for my entire family!  I would never let him go!  He will be the best doctor.  He has such a wonderful bedside manner, is so compassionate and caring, and is so competent with his technique.  I wish him the best of luck with his career, and he better come around when he gets back to Bethesda in two months!

That goes for Randy Mielky too!  He also finished his rotation.  I didn't have as close, daily contact with him since he was not on the trauma rotation, but I did have daily contact when he was in the ICU and on the pain service.  He is off to another hospital for two months as well.  He is just wonderful and will be a fabulous doctor.  He is an anesthesiologist, and if i had my choice, he would be the only one for me in the future.  He came by to say good bye before he left, and my eyes teared up.

Good luck to all of the residents starting new rotations!  Best of luck to those who have to learn to tolerate me!  :-D

Derek zipped around in his wheelchair today, was a complete brat, teased everyone he came across, and is really feeling his oats.  In other words, he is getting better, which is the best news possible after 94 days!  We are officially the seniors on the floor.  Not a title we relish.  Time to move on.

Derek is finally getting better in leaps and bounds.  After three months of baby steps, he is getting better in giant steps.  Way to go, Derek!

God bless!