A Good Day

This is a tough journey.  Almost everyday there are steps forward and steps backward, side steps, obstacles and triumphs.  I am setting them forth in this raw, unedited account of what it is like to live through one of the worst experiences imaginable.  I have not complained to anyone about the position in which i currently find myself.  A lot of my personal feelings are still deep down inside.  This is the hand that I have been dealt.  Honestly, it sucks.  Plain and simple.  But everyday we find something to make us laugh.  Even on the rough days when there is negligence and hurdles, we still find something to make us laugh. 

I am not going to stop reporting on what I am seeing.  If just one patient's care is better because I spoke up and things were changed, I have been successful.  This is not complaining.  This is a straight forward account of what I am seeing, first hand, from the war on the homefront.  It's tough to watch.  It's tough to read.  It's easier to go about daily life and ignore what our wounded warriors face after they selflessly put themselves on the line.

Looking around at these warriors breaks my heart but also gives me hope and strength.  When I wake up with a pain in my back or neck, it's nothing compared to what they are facing.  They give me strength to go on.

The injuries are different on each warrior.... no two are exactly alike.  It's like ordering a whopper with your own special mix....  I'll have a double with extra pickles and ketchup, but the next guy has a cheeseburger with no pickles, mustard and mayo, no ketchup.  Same with these guys.  One is a triple amp with a hip disarticulation and no other signs of injury, but his buddy has two AKA (above the knee amps) and a fractured pelvis.  The next guy might have shrapnel in his leg, while the one beside him is fighting such severe infections he has gone septic twice, so the one below the knee he also has feels like nothing.  One thing they all have in common... the will to live and to live that life as fully as possible.

Derek met with Gen. Peter Chiarelli, Vice Chief of Staff of the Army and Dr. Ashton Carter, Deputy Secretary of Defense today.  The fact that these men and their lovely wives came out on a Sunday to visit with the wounded warriors is a tribute to them.  We were outside when they arrived, and they came over to us and talked for a while.

Derek told them that prior to this, he used to tell the medic, "Doc, if I lose anything, let me bleed out.  Don't save me.  but when I woke up in the ICU and asked my mom about my legs and she told me they were gone, my reaction was, "F it" and all I wanted to do was live."  Since that time, he has been fighting to live.  This is the spirit of the wounded warrior.  NOTHING keeps them down.

This kid will walk again.  This fight for his life and quality of life, and all that Krystina and I gave up to be here with him and all the fighting for him, this is worth every bit of energy.

Today was a good day.  Derek's spirits were up and he joked with us most of the day, except when he put off to drinking his muscle milk once again and I snapped at him.  He needs the protein for muscle health and development and wound healing.  He has to drink it.  I was tired of him puttng it off.  We did his OT on his arm, and the range of motion is coming back slowly.

His blood work was a little off, high potassium and high lipids, but the docs were on the potassium problem right away.  We will discuss the lipids tomorrow since the results came back after Dr. Cliffords had left for the day.  It must not have been too bad or the ASOD would have addressed it.

Dr. Cliffords kept running back into the room with "one more thing."  Finally, he said, "I just like coming in to see you guys."  He is good.

Dr. Bograd was around this morning and on "the oxygen incident" from yesterday.  He is quite pleased with Derek's progress, as are we all!

This past week Derek was decanulated, got off oxygen, had the tube feeds cut in half, started on a regular diet, had the flap taken down, and stopped all antibiotics.  I'll take another week like this past one any time, even with the troubles, because this is life and troubles are a part of it.  As long as Derek keeps making strides forward, I can handle the battles!

And how awesome is Dana Brown Ritter?  She visited with us with her brother Sgt Chris Brown a couple of weeks back.  I didn't even know she did this until a friend told me she found it!  It's beautiful.

http://www.lovelikethislife.com/2011/10/picture-of-love-and-sacrifice.html

Thank you for all of your continued support and prayers.  They are helping.  The support keeps up going and the prayers, ... well, we all know what they do!

Climb to glory... all the way... to the top... Don't you stop, Derek!  You have an army behind you and the Lord as your rear guard!

P.S.  Dr. West, if you happen to be reading this entry, this is for you.  The other morning, i got on the elevator in my own little world, not paying attention and pushed the 7th floor.  Dr. Cliffords said my subconscious is trying to tell me something.  He is probably right.

Headways and Headaches

The good news for today is Derek is finally off of oxygen full-time and is off all antibiotics. 

The antibiotics are the result of the CT scan.  He will be watched clinically and another CT scan taken next week, and if all looks good, he will be cleared of the infections.  Finally

First a question... what is the role of the one-to-one in a patient's room?  To watch the patient.  To make sure that the patient is safe and has his needs met.  Now on to the oxygen....

The oxygen is a wonderful thing, but it was done all wrong and caused my a major migraine.  I hope I passed that migraine on to the ones who committed the negligence! 

A few days ago, we tried to take Derek off of oxygen and he lasted one hour before his sats dropped to the 80's.  During this hour, he wa on the pulsex monitor the entire time and he was closely monitored.  he was also awake.  He was hovering in the mid-90's before he dropped.

This morning, at around 05:30, vitals were taken and the oxygen was in place.  At sometime around 07:00, the oxygen canula was lying beside Derek on the bed.  Nurse brainiac, who has never had him before and did not know his history, instead of looking in the computer where it showed constant oxygen until that point, or instead of asking someone who might know, or I don't know... here's a concept... instead of erring on the side of caution and putting the oxygen canula back on until she could find out... checked his sats, saw they were okay, turned the oxygen off, and left the room.  The order might have said titrate as needed, but without knowing the patient's history, and with the history in the computer being constant oxygen until that point, shouldn't she follow-up and check or at least wait until the patient is awake?  Derek was sound asleep.  I was told by another one-to-one, who I love, that he thinks Derek has sleep apnea.  Makes it worse.

Deep breath.

Let's say what happened a few days ago happened again.  Derek would have desatted without the pulseox (sp?) in place some time around 07:30 or 08:00.  I was told he would have woken up gasping.  Guaranteed?

What was his one-to-one doing when I walked in at 08:00?  Facebook.  Why didn't the one-to-one before see Derek take it off and replace it?  Why didn't the nurse err on the side of caution and put it back on instead of turning it off?  Playing with people's lives.

I was furious.  To say I yelled is an understatement.  It took all day to finally find out what happened and pumpkin butt (she was wearing orange scrubs) brushed it off by saying his sats were fine when she checked them and he was doing fine today off the oxygen.  So not the point. 

Just because it turned out okay does not excuse negligence.

Trial by fire.  Sink or swim.  NOT the safe test that I discussed with Dr. Bograd.  The fact that he was able to do it is a testament to how far he has come.  The fact that he had to do it under these circumstances is a testament to negligence.  And they tell me to trust the staff and go get some rest?  Not.a.Chance.  I only left tonight because I trust this particular night nurse and love his one-to-one.  If it was anyone else, I would be camped out in that chair.

It puts a shadow on the triumph.  I should be celebrating that he is off oxygen, but it happened all wrong and gives me pause about the quality of care from some of the contract nurses.  Is it so hard to err on the side of caution?

But here is to his victories today!  No more full-time oxygen, no more full-time tube feeds (12 hours a day now), and no more antibiotics.  We are closer to the edge of that damn forest!

We are making that climb to glory!  God bless.

A Safe Place

Patient safety.  What does that mean?   Simply put, keeping the patient safe... duh.  Not killing him.  Not making him worse.  You would think that this would be simple.  It's not.

There is an article in the Washington Post addressing recent deaths linked to platelet transfusions from blood donated right here from Bethesda.  Someone didn't properly scan the blood before it was sent out.  You would think that something so simple and avoidable would never happen.  But it does.

Mistakes like that happen everyday, in almost every hospital.  Does that excuse it?  Hell to the no!  People's lives hang in the balance so extra care needs to be taken to ensure that mistakes like that are NOT made.

In the PACU today, after the dressing and wound vac change, when Derek was getting ready to be transferred to the ward, the nurse removed Derek's nasal canula for his oxygen.  Krystina asked him what he doing, and he said getting him ready to transport.  The nurse did not know that Derek was on oxygen 24/7.  Why?  If Krystina was not there, what could have happened?  Derek might have been fine since he was fine the one time when the oxygen was not hooked up properly after he returned from a jaunt in the wheelchair, but he might have desatted like he did when we tried to wean him off oxygen a couple of days ago.  This would have occurred while he was enroute, and no one would have noticed until he was on the ward, set up and vitals taken.  The patient transport people are not the brightest bulbs in the box since they cannot even steer the bed and take out doctors and unsuspecting walls along the way, so would have have noticed the patient in distress?  It could have been disastrous.  Would Derek have said something?  Probably not.  Was he asleep?  Bottom line....it never should have happened.  The nurse should have known the patients needs.

The fact that this happened while I was meeting to discuss patient safety is ironic.

It felt good to actually be out of the room today, but my mind was with Derek, wondering whether there was something happening.  But I did get out, twice.

The first time was for the aforementioned meeting on patient safety.  A friend and I simply talked about what we see from a patient's perspective and where we see improvement is needed.

What did we say?  First of all, we made sure to point out that the primary doctors are wonderful.  The medical staff is top notch.  When I have brought my concerns directly to Derek's primary doctors, Dr. Perdue especially, action was swiftly taken to correct the problem.  I have no issue with how it was handled once it was brought to someone's attention.

Most of the issues I have had is with communication, and my compatriot had similar experiences.  Covering doctors do not always know the patient, and they enter orders when things should be left for the primary team.  My problem with one team in particular is that the interns, residents and staff doctor are all on different pages when it comes to Derek's care, and no one seems to know what is going to happen in the OR next week, or even on what day, since one of Derek's doctors showed up today and told me a day that is different than what I was last told!

We have growing pains because of the Army and Navy coming together.  They are each wonderful, and they are each top level care providers, but they have two different and distinct ways of doing things.  I see it in something as simple as setting up the supplies.  The two need to stop bickering like children over a box of toys and learn that there are enough toys in the box to share.

We also brought up mechanical issues, such as heavy doors that are not wheelchair friendly and do not have wheelchair accessible buttons, elevators that are always out of order limiting a patient's ability to get to PACU and other areas of the hospital, sidewalks with large spaces that cause wheelchairs to topple, the grade on the slope between McDonald's and Building 10 (the main hospital) being so steep that I watched a man in a wheelchair slide back down three times before he gave up and went a convoluted way all around the country, etc.

It felt so good to be out there, doing something, and feeling like I was actually making a difference for these guys.

I returned to the room to find Derek in good spirits and Krystina under the weather.  Derek is getting better, so it is okay for me to escape for a few hours.  It felt good to be away from the hospital, and I even attended the Aleethia dinner tonight.  Every Friday night, the Aleethia organization (http://aleethia.org/) provides dinner for the wounded warriors and their families.  Krystina and I have not been attending, because we have not wanted to leave Derek alone.  Team Allen was present, who amaze me to no end, and it was wonderful.  I cannot wait until Derek is well enough to come with!

On the note of yesterday, I was told today that the blog issue is dead....for now.  The powers that be have decided that I have a right to do this.  Your point?  I knew that.  If they had decided otherwise, there would have been a fight.

When the issue was raised to begin with, what were they afraid of?  If I took my story to the front page of the NY Times, should it matter?  They should be providing stellar care to ALL of our wounded warriors, as well as the other patients, whether or not the patient is there alone, whether or not there is an advocate like me with a big mouth standing there yelling, whether or not there is a blog reporting what they do, and whether or not a camera crew is following them around!  They should ALWAYS act like it is an episide of Real Life Bethesda and a camera crew is looking over their shoulder.

So, at least for now, I can put aside the fight over the blog.

Krystina made me fall in love with her all over again.  Derek was playing around with her and pulled off his sheet, danced and sang, "Wiggle it, just a little bit."  Remember, his left leg is gone from the hip, his right leg is gone from high about the knee, and he has pins in his hips.  Krystina laughed and told him to put the sheet back.  He looked down and remarked that the right leg was higher than he realized, and he asked her if it was hard for her to look at.  She told him she has been looking at it for 13 weeks (14 weeks since his injury, 13 weeks tonight in Bethesda), and she doesn't care.  He apologized to her and said he was sorry if her life was different.  Krystina, this wonderful, strong young woman told him that he was lucky to have his little stump because it could have been as high as his left leg and then it would have been harder for him to walk.  At least with what he has, it will be easier on him.  She didn't care about the impact on her.  She was worried about him.  This girl is truly amazing,

End of a long, busy, exhausting day.  Tomorrow should be a day to rest, visit with some people who have said they are coming to call on us, and just concentrate on healing both mind and body.

Climb to glory.  God bless you.

Wiggle It While You Poke The Bear

The First Amendment allows individuals to stand outside a military funeral and hold vile, disgusting signs saying, "Thank God for dead soldiers," and "God hates soldiers," but a blog from a mother advocating for her son wreaks havoc around a military hospital... emails, talks in trauma rounds, visits from many.

My little blog has caused quite a stir.  Are they trying to stifle my first amendment rights?  Some are.  Couching it in terms of hipaa violations with the terms defamation of character, slander, privacy, etc. also thrown around.  But Derek is all for it so hipaa does not apply.  I also do not mention other patients by name, I change names, and various individuals involved in Derek's care have all been aware of the existence of this blog for months.  I praise those who deserve praise.  If someone is less than stellar, I file a formal complaint, and on the blog, I vent, but I do not say the name.  Where is the problem exactly?

Could it be as one of the doctors said to me today that they are embarassed because they were caught with less than stellar care?  Get over it.  No one is perfect.  Mistakes are made.  That's life.  As much as I would love to believe that a mistake would never be made, it happens.  That's why constant vigilance is required.

I would love to believe that everyone is always on his game.  I would love to believe that everyone is always doing a perfect job, in a great mood, never upset, and, by the way, that winning lottery ticket is my back pocket and world peace will be achieved by next Tuesday.  If this were the case, there would never be a need for doctors, lawyers or politicians ever again because we would be living in a utopian society where everything is perfect.

That's not life.  Mistakes happen.  Maybe by knowing they are being watched and held to a higher standard they will watch themselves a little more carefully.

One doctor said today that stifling this blog would be germane to clamping my g-tube... if it was done, everything would blow out other ways and THAT would not be good for anyone.  This is very therapuetic for me and the main reason the restraint team is never going to be called.

I have not hidden the fact that I have this blog from anyone.  I told various individuals about it since the beginning, and many have looked at it.  Not one has said a word about it until today and the one who complained did it by email.

We have been here 90 days today, and NOW it is a problem?  Because my congressman showed up on Monday?  I didn't call him.  But someone sent an email around complaining about this blog.  A better approach would have been to talk to me.  If there is something that I am doing here that this person thinks I should be doing different, talk to me.  I spoke with each person who approached me today, and each of them who have looked at this blog told me I was a good advocate for my son as well as other things that were complementary. 

One of the main doctors told me today not to let anyone stifle my voice. He has looked at this blog and told me I should turn it into a book when I am done.   I don't know if I believe that, but I am flattered. Thank you, but one email from one person who overreacts is not my concern.

I have found that the care at this hospital has been top notch.  I love Derek's doctors, and I love Derek's nurses.  Most of all, Derek is comfortable with them and is getting better.  I am very happy with it overall.  But it is a teaching hospital, and as with any hospital, you have to watch, because people are involved and people make mistakes.  It's the human condition.

Keep on your toes and keep your eyes open.  Be an advocate and don't be afraid to speak up.

On to Derek.  He had an awesome day.  During clean up this morning, he was wiggling around singing, "Wiggle it, just a little bit!" and "Everybody dance now!"  He had us laughing our butts off.  We ended up singing "wiggle it" all day.  It's a catchy tune that we cannot get out of our heads.  It became the tune of the day.  Derek played Chipmunk songs this afternoon, and Dennis the Corpsman and I boogied down by the bedside!

MJ and Sam came by and got Derek dressed.  He was thrilled.  Little things that we take for granted everyday, like getting dressed, showering, brushing our teeth, going for a haircut are major milestones after traumatic injury.  Derek struggles to brush his own teeth, but he can do it.  He got dressed in real clothing today and went to the barber for a haircut for the first time in three months.  A shower is still on the horizon, but it is coming.

Derek also took a tour of the MATC today.  That is the site in the America building where the guys and gals go for physical and occupational therapy.  Derek was able to speak to other amputees with similar injuries.  He saw guys with hip disarticulations walking!  One of the guys told Derek that when he gets to come to the MATC every day, he will become part of that family, and his recovery will improve in leaps and bounds.  He described the guys down there as a big family who all help each other.  I could see it in Derek's face that he cannot wait to join them.  He talked about it all night.

So, tomorrow is shaping up to be a busy day!  Will have a lot to report!

God bless!  Don't let anyone stifle your voice!  Climb to glory!  All the way and shout it from the from the mountain top!

Nicknames, Threats and Vocabulary, Oh My!

Let's see, this week I have been referred to as the Jersey Devil, a pit bull and mama tiger, and it's only Wednesday.

Since I have arrived, I have been threatened with the restraint team, a room on the seventh floor (mental ward) and shackles, but they have never said I had to leave.  THAT is a line I will never cross.

The worst part of this is the expansion to my vocabulary.  I have learned words and phrases I never throught would be part of my life:  decanulation, AKA, BKA, papercut (nickname for BKA), hip disarticulation, PICC, supra pubic, PACU, etc.  These words have become part of my every day life.

Anyone can give up.  It's the easiest thing in the world.  But to hold it together when anyone else would expect you to fold it in and fall apart?  That's strength.  I am not going to fold.  I am here for the long haul.  No matter what you throw at me. 

Let me tell you a secret to strength.  I know I am strong, most of the time.  I have my moments.  I am not invincible.  I had my moments throughout this ordeal when I didn't think I would make it.  But strength sometimes is an illusion.  It's a mask.  If you put on a good enough mask and come across as strong, people will think you are stronger than you are.  When you are weak, you put on the mask and smile, drawing on the strength of the others around you who believe that you are just as strong as you were yesterday, and that makes you stronger.  Sometimes, it doesn't work.  My mask cracked last week.  Angela and Dr. West saw those cracks.  They tried to get in, but I cannot let down my guard.  That's my way of keeping strong.  That's what works for me.  It might not work for everyone.  Find what works for you.  Last Thursday was a particularly bad day for me.  If it wasn't such a bad day, I might have let them in, but I couldn't.  Everyone has their own way of coping.  Mine is to put on my big girl panties and just do it.  I'm a problem solver, not a wah ah boo hoo kind of female.  Whatever works, I guess.

Today was a good day for Derek.

He had a special visitor.  General Terry is back from Afghanistan.  General Terry is the Commanding General from Fort Drum, Derek's duty station.  We had a wonderful visit with General Terry.  He talked to Derek about the mission, his injuries, his stay in the hospital, and a lot more.

Some of Derek's friends came from NJ for a visit - Marco, Charlie, Rusty and Marion.  High school friends.

We were told that Derek had the perfect profile for adrenal insufficiency due to high potassium, low magnesium, low blood pressure and other abnormalities, so they tested the electrolytes this morning and everything was fine.

Our favorite OT, Sam came and started working with his elbow today.  Derek has not moved his elbow in three months!  It was painful.

Dr. Borgrad and Dr. Perdue came in together and we got a great picture of them.  That will be posted tomorrow since Gen. Terry is on today. 

Dr. Bograd promised to work with Derek on decanulation.  He has not gotten him off oxygen, yet, but he did get him off the trach!  Derek said it felt so great to get that plastic out of his throat!  I told him I am going to make a Christmas ornament out of his passy miur valve.  Yes, I'm strange like that!

Now a sidebar about the kindness of people.  We have come across some heartbreaking stories that make me sit back and wonder what has happened to mankind.  But we have also seen some wonderful people that show me that God is alive and well and living in the hearts of man.

Jessica Allen is an angel.  A young woman arrived in Bethesda with her boyfriend last week.  Her boyfriend is a wounded marine, and this young woman came to be by his side.  She couldn't get on orders.  The marines would not give her a place to stay.  Can you imagine?  Well, little miss Jessica sent a strongly worded text and the phones blew up!  That young lady is resting easy tonight.  No more sleeping in the hospital on those uncomfortable chairs.  I would have let her stay with us tonight had the marines not come through today, but they did.  Jessica, you are awesome!

Yesterday, I got my hair done.  When I left the salon, I walked out and left my kindle sitting on the counter.  I didn't notice until I was in Derek's room talking to Derek's outpatient nurse case manager, Lt Col Michael Crumm.  I said I would have to go back later in the week to get it.  Later that day, Mike walked in with it!  Thank you, Mike!  You are a doll!

Tom Mautone of the North Caldwell Police Department and my friend Maria Fornaro and doing fund raising for Derek and the family expenses.  Sue Kappock from Gould School and Marie Thomas both held bake sales in Derek's honor.  So many have sent care packages and I have tried to mention them as they arrive.  Dana Brown Ritter makes us home cooked meals.

For everyone who has been showing us special kindness during this nightmare, thank you.  You are the reason that we are keeping strong.  You are helping us to keep going.  Knowing that we have a good support system out there is one of the reasons that we can keep going every day.  Knowing that we have support during the worst times makes the good times better.

Thank you.

God bless you all.

Climb to glory.  To the top.  All the way.