Monday, February 6, 2012

Pόg Mo Thόin

I received a shirt from the NYFD yesterday at the Super Bowl party.  On the front it says, "Pόg Mo Thόin."  If you don't know Irish, this means, "Kiss my ass."  It was the perfect day today to wear it.

When Derek arrived in Bethesda 198 days ago, his purple heart was in his bag.  Apparently, it was given to him while he was unconscious.  Was it pinned on him?  Are there at least pictures of it?  We don't know.  I was told in August by the Platoon Leader that he would get it pinned on him when he was awake and alert and knew the honor that was being presented.

That was August.

I've asked several times since then, and each time I was told it would be arranged.  I finally started really pushing for it.  I was told he would partake in the big ceremony after he was an outpatient.  At this ceremony, many guys get their purple hearts.  Derek does not want that.  He doesn't like pomp and circumstance.  He doesn't like the dog and pony show.  He just wants a private, quiet ceremony.  We were told it could happen.

It's been months.  I've been asking about it for months.  Finally, last week I said I need it done.  Now.  I might not be here in March for the big ceremony that Derek doesn't want, and if they put it off too much longer, I might be working or gone home!  I want to see him get his purple heart!  He wants me there.  I want him to get it.

So last week I made the phone calls and pushed the people I needed to push.  I was told it would be Tuesday, as in tomorrow.  I was told that we just needed to set a time.  Well, people want to be there.  I was told the time this morning and passed it along.

This morning I was told ten.  I told Derek's doctors, the facility pups and their mommies, his therapists, the ancillary people involved in his care.  I wish I could get his siblings here and his aunt and uncle and cousins, because I know how much they would love to be there when he gets his Purple Heart.  Unfortunately, they can only come on the weekends due to school.  My father, the man who was there and helped raise Derek, is trying to get down here in time.

At 5 pm I received a phone call that they were putting off the ceremony because they didn't want a Captain to present it, they wanted a General.  Seriously?  It took me two hours of "screaming" phone calls and texts to the Lt Col who called initially, the Captain who offered to present it in the first place, the liaison and the squad leader to finally get it done at 1000 tomorrow morning.  I was so stressed and aggravated by the time I got the go ahead that I was ready to quit! 

THEN I get a call at 7:09 telling me they were going to do it on Thursday when some big wig was going to be here, but they couldn't guarantee that this big wig could do it because they didn't know his schedule.  Then, I was told that someone higher than a Captain would do it, but it couldn't be done until the afternoon.  ARGH!!!!  NO!!!!!  I've already retold everyone that I told it was cancelled to that it had been reset, and my father is trying to get down and couldn't be here on Thursday afternoon, and I like this Captain who wants to do it and has been so helpful and willing, so ABSOLUTELY NO!!! 

Can you read my shirt?  It says what I am feeling.  Pόg Mo Thόin.

On top of that, I had a fight about the outpatient nurse case manager (NCM) today. 

The NCM is the one person you have to rely on more than anyone else when you are an outpatient.  When you are discharged, all of your doctors change.  You go from the inpatient team to the Warrior Clinic.  A whole new team has to learn about you and get to know you.  Derek has a heck of a lot more to review than most patients.  He has over six months of records, when most of the guys have about two months.  The only doctor who will continue with Derek is Dr. West.  He will also keep the OT and PT he has now, because he switched to the Matc already and no longer sees Sam and MJ, who were his inpatient OT and PT.

The NCM is the one who will follow all of Derek's care.  The NCM schedules all appointments and tracks the WW until discharge.  The NCM needs to understand the WW and what he can handle on a daily basis so he/she doesn't schedule too many appointments in one day.  The relationship with the NCM is a very important one.

In August, we met Derek's NCM.  Loved him.  He was very low key and quiet, but he was there.  He came to visit us every week.  Even when Derek was unable to communicate well and was really out of it, he came to visit Krystina and me and to check on us.  One day, I left my kindle at the mall when I got my hair cut.  I told him I was an idiot and would have to go back over the weekend.  A couple of hours later, he walked back into Derek's room with my kindle!  Love him!  He was so up on Derek's care and so attentive.

Unfortuately, his time ended and he is scheduled to return home.  His last day as Derek's NCM was 1/23.  *sad face*

So, who is the new NCM?  No idea.  Oh, I know her name, but if I ran into her in the hall, I wouldn't know her.  I was told she was there when Derek first stood, but she didn't talk to any of us.  I texted her last week, and she didn't respond.  Okay, it's possible she didn't get it.  I'll give her the benefit of the doubt.  I'm not getting all of my texts, so it is possible.  I texted her again today.  She responded, and then she called me.  Attitude.  I told her I was concerned that she had been Derek's NCM for two weeks and had not met him.  She claimed she had been by three times, but Derek was not there twice and the third time he said he didn't want to be disturbed.

Okay, first of all, if she was keeping up on Derek's care, she would know that he is in the Matc at the same time every day.  That's really the only time he is out of the room.  As for telling her he didn't want to be disturbed?  Derek has no recollection of that, which doesn't mean much with his short term memory problem, but he said he would never tell one of the medical staff to not bother him, so he knows it didn't happen.  When I told her, she changed the story.  She said the nurse went in and tried to wake him up to talk to her, but he told her "No."  Derek said it didn't happen.  I asked if it was before 8 a.m., and she said no.  Then it didn't happen.  Krystina and/or I arrive every morning around 8.  No one ever came in and said the NCM was there.  It didn't happen.  If it had, I would have gone out and spoke with her.

But that is so not the point.  If she did try and we weren't there, she should have made it a point to come back.  She should have made it a point to meet us, especially since we are so close to outpatient now and she has so much to learn about him.

I'm sorry, but you cannot replace someone who was top notch, the best, completely awesome and not have us expect the same from you.  The trust and confidence are not there.  And then you argue with me the first time you speak with me?  Oh, so not going to happen.  I'm sorry.  You're fired.  We want a new NCM.

So, tomorrow I will be talking to a couple of people to ensure that we get a NCM in whom we can trust.

This was an aggravating day.  Stick a fork in me.  I am SO done!

Derek had a good, relaxing, peaceful day.  He slept most of the day.  He woke up this "morning" at noon.  We had to go for an ultrasound of his liver at 3:30, and when he returned, he fell asleep again.

The liver ultrasound is to check for fatty or enlarged liver.  His liver enzymes are trending down, but they have see sawed a lot recently, so they want to check the liver.  We should have the results tomorrow.

Tomorrow, at ten, Derek will finally get his Purple Heart pinned on.  Woot!  Finally.  I am so over it, and the aggravation has caused all of us to really not care anymore, but I'm sure that will change tomorrow when the Captain arrives to pin it on.  We are glad to just get it over and done with!

More boulders to climb over today, and we scaled them!  Climb to glory!  All the way.  To the top.  After the day I had, I'll meet you there with a stiff drink and we'll toast to our success!


  1. Don't understand why you have fight for everything! This should have been done a long time ago! So glad it's finally going to happen!
    Know that the Lord is always with you, wrapping His loving arms around you and holding on tight! Praying right now!
    Psalms 18:2-6 The LORD is my rock, and my fortress, and my deliverer; my God, my strength, in whom I will trust; my buckler, and the horn of my salvation, and my high tower. I will call upon the LORD, who is worthy to be praised: so shall I be saved from mine enemies. The sorrows of death compassed me, and the floods of ungodly men made me afraid. The sorrows of hell compassed me about: the snares of death prevented me. In my distress I called upon the LORD, and cried unto my God: he heard my voice out of his temple, and my cry came before him, even into his ears.
    Prayer Bears
    My email address

  2. Keep rockin' it, Siobhan! You are the BEST advocate Derek could ever have. You are like a pit bull who grabs on and doesn't let go until the job is done. Don't you wish others did their job as well as you do yours?! Keep the faith!

  3. Here praying as always!
    Psalms 18:28-30 For thou wilt light my candle: the LORD my God will enlighten my darkness. For by thee I have run through a troop; and by my God have I leaped over a wall. As for God, his way is perfect: the word of the LORD is tried: he is a buckler to all those that trust in him.
    Prayer Bears
    My email address