A Piece of My Mind And Holding My Tongue

 

I have given so many people a piece of my mind, I am surprised I have any left for myself!
But I passed a major test today.  I found myself on the elevator with the little resident who failed to make the right decision and put Derek in harm's way on Saturday night.  I prayed for the Lord to give me the strength to keep my mouth shut.  He tested me.  He stopped that elevator on every floor.  I didn't say a word.  I took off as soon as the doors were open enough for me to fit, but I kept my mouth shut.  I turned the problem over to the people in charge and I will leave it at that.  I already spoke my mind to her on Saturday night.  Nothing good will come of giving her another piece of my quickly dwindling mind.  I really don't need that restraint team showing up.

This morning Derek was visited by Senator Jack Reed (D-RI).  He was very nice.  Graduate of West Point, Army Ranger, Vietnam vet.  He and Derek had a nice chat about war, the army, Derek's medical treatment, etc.  It was a wonderful visit and really raised Derek's spirits.

Holy mail truck, Batman!  Talk about getting the call out!  Thank you to everyone who is sending cards and care packages.  It takes a while to make it through the mail system here, but once it does, the Liason office says they know where to find us because Derek gets a stack of mail!  They had to send a couple of people to deliver this week's stack!  Thank you SO much!  It really is appreciated, and he had a huge smile on his face!

Derek went back to Interventional Radiology today.  After what happened on Sunday when he felt most of the procedure and suffered through it (for almost four hours only to have them not be able to place the tube), they had an anesthesiologist present.  Giving them a piece of my mind worked.  They fixed the issue and Derek was comfortable.

But most importantly, the specially ordered tube actually worked.  They were able to get it placed.  Unfortunately, because it was a specially ordered tube, they didn't have the right supplies to hook up the bag to drain the G portion (now called "aspiration") or the J portion (now called "feeding").  They jury rigged something because military personnel are awesome like that.  It's not as easily manipulated as the other J/G tube he had, but since it is further placed in his anatomy, this one should actually work.  Finally!
After the procedure, Derek was taken to PACU because he was given a stronger sedative.  He was given propofol, versed and fentynal.  His blood pressure was fine.  Too bad that combination cannot be used when he goes for regular surgery or we would not have problems with this flap procedure.
Anyway, he called for me in PACU and the first thing he said to me was, "It worked.  Pasta for dinner."  Sorry, honey.  Still on full liquids.  Maybe soon.

Today I met with Dr. Howard and Dr. Perdue to discuss the flap procedure.  Dr. Howard showed me pictures of Derek's arm!  He asked me if I could handle it!  Seriously?  I watched my own c-section!  I raised 5 kids by myself, 4 of them boys, some of them frequent flyers to the ER.  It was interesting to see the exposed bone, muscle and tissue and not as bad as I thought it would be.  They explained the procedure in full detail.  I feel better.  I still have some concerns, and this is going to suck worse than an industrial vacuum for him, but we will get him through it.

The plan is on Monday, they will try to do the free flap.  If his BP decides to do the droppy thing and play games, they do the TEF as the back up.  That is the safer procedure, the shorter procedure and the one with less chance of failure.  Am I happy?  No.  Am I sure?  No.  But I am going to trust Dr. Perdue.  When my kid had less than a fifty percent chance of living, he saved him.  Derek is still not out of the woods, and he thinks he will be fine through this.  I hope he realizes Mom will need a little hand holding during this.
There was more talk today about polytrauma rehab.  Derek will not be happy, but it looks like it might be best.  He may not be strong enough for amp rehab right away, and polytrauma rehab will kick is butt into shape for a couple of months until he is ready.  It is intensive OT and PT for a couple of hours a day instead of just 45 minutes per day.  If that is what he needs, then maybe it is best.  It is stll weeks away, because the x-fixes in the pelvis will not be removed for at least another three weeks, so we have time to discuss and consider it.

Derek is still on the protonix.  When the nurse said she was giving it, I said, "plutonium?  You're going to make him glow?"  She laughed.

My assignment from Dr. West is to get more wounded warriors in to visit.  Derek was down in the dumps this morning and ready to give up.  After I kicked his butt a little, he cheered up and said he realized God had bigger plans for him.  Dr. West told me Derek wants me there.  He doesn't want me to leave.  I'm not.  Dr. West thinks it will help for him to have more wounded warriors to talk to him.

Anyway, surgery in the a.m.  It's almost midnight and I am exhausted.  Up at 05:00 to get to PACU.  Ortho and urology on board tomorrow.  Oh!  Got to ortho today and gave them a little piece of my mind about the lack of communication!  Got them to agree to come around a little more often.  Apologies and promises.  We shall see.

Good night.  God bless.  Love to all!

Bedside 101

 

I don't know what classes doctors are required to take in medical school, but if Bedside 101 is not a required course, it should be.  And it should be a required refresher course every year for most of them.  *shaking my head*  I swear.  A lot of them have great bedside manner, and when they do, I tell them.  I let them know when I think they are wonderful.  When they don't, I let them know that too.  This one today?  He almost hit the floor.  I was told next time I need to put my shoulder into it.

Plastics, the anesthesia team, etc. had a meeting to discuss the problem with anesthesia to decide what needed to be done with the blood pressure problem.  I had asked to be part of that meeting, but I was never told the time or place.  And when they sent the resident to tell us the results, I guess he didn't think it was important for me to hear what happened because he went to anesthesia fogged Derek who didn't have his speaking valve in and the resident didn't wait for me.  Krystina and I walked in midway and I told him to rewind to the beginning and begin again.  He didn't seem happy with that request.  Well, tough.

He started with this complicated tale in doctor-speak that the decision was made (not without input from me it hasn't!!) to do this other procedure called a thoracoepigastric flap (TEF) and it would be done on Friday.  I started asking questions and voicing my concerns and his response was, "It's better than amputating the arm."

Excuse me?  Oh no you didn't.

I told him that was not an option.  The look on Derek's face.  He is lucky I didn't hit him.  I told him I wanted Dr. Martin.  He's on leave.  Dr. Howard will be doing the surgery, Dr. Martin's boss.  I told him I wanted Dr. Howard, not him.  That I would not talk to him again.

I paged Dr. Perdue and he said he would get me Howard.  Dr. Howard was there very shortly and answered all of my questions and I let him have it for the amputation comment! 

Let's see if I get this.  A free flap is where they take a section of skin, tissue, muscle, whatever from one part of the body and attach it to another part of the body.  It is a very difficult surgery where they have to attach the tiny little nerves, vessles, etc.  There is a failure percentage rate.  They cannot do this surgery if the patient requires medication to raise the blood pressure because that restricts the blood vessels and that could a clot.

The TEF is where they make an incision in the abdomen and insert the arm into the slit basically attaching the arm to the abdomen for a period of about three weeks.  When the skin, muscle, tissue, whatever they need is now transferred to the arm, they detach what is needed and perform a skin graft on the abdomen.  It leaves a handprint scar on the abdomen and the success rate is higher than the free flap.  Downside?  Range of motion is restricted for three weeks.  Downside for Derek?  He has pnuemonia and needs chest PT.  He has been getting chest PT with a vest that is the best for him and they will not be able to put this on with his arm attached to his side.  They have chest PT with this other machine, but he cannot lie on his side or stomach due to the x-fixes in his pelvis that already restrict his range of motion.  He also needs his OT and PT on that shoulder and that will have to stop for three weeks.  If they wait to do the procedure for two more weeks, the scar tissue and skin will continue to occify (sp?) and calcify and that is not good.  Yes, they could cut it away, but that is not recommended.

I discussed this with Dr. Perdue, who I trust, and he thinks it will be okay.  This reduced my anxiety somewhat.  Somewhat.  This is still a terrible decision to have to make.  They said they could go in there with the intent to try to do the free flap, and if the BP does it droppy droppy thing, go for the TEF.  It doesn't always drop.  There have been a few times where it stayed up.

Dr. Perdue thinks the other issues will be okay, so trusting him, we can work around them.  But there are still concerns, because it is only a "think" not a "yes, they will be fine."  He told me he cannot give me a guarantee.

He also told me Derek is closer to the edge of the forest and not as critical, but he is not out of the stupid woods.  I would feel so much better about all of this if he was out of the woods.  Anyone got a chainsaw?  Maybe since he is closer to the edge it will work this time.

If we wait, and I decided they could cut even though it is not recommended.....  Oh I just don't know.  I hate making these decisions alone.  Derek said whatever I decide is okay.  We are meeting again tomorrow to discuss it a little more.

Surgery 31 was today.  Just an ortho washout of the arm and changing of the wound vacs.  Those ortho guys need Bedside 101.  No update.  Haven't seen them.  I will be on them tomorrow.  They need to come see me and give me an update after surgery.  Two minutes.  Just let me know how it went and what they did.
I liked Derek's anesthesiologist today.  Dr. Rodriguez.  Nice guy. 

There was a little bantering in the PACU between two anesthesiologists this morn (one wearing a Red Sox (a/k/a Beat Sux) cap and one wearing a Yankees cap.  I had a nice chat with RS guy.  He's taking care of Derek before.  Why I trusted him with my kid when he cannot even pick a ball team, I don't know, but he did a good job.  He a good guy, anyway.  The two of them rolled a patient away together to people commenting about the teams finally being about to work together!  The start of world peace!

When I got back to PACU after the surgery I walked in to chaos!  Derek was "screaming!"  I started really yelling.  His IV pole had been left in the OR so he did not have his pain meds.  It was being wheeled in with me.  There was no order for pain meds.  The kid was suffering!  He was in tears.  I started screaming, "WHY is this kid in so much pain?!  WHY is he alone?!  WHO is supposed to be taking care of him?!  Get me a nurse!  Get me a doctor!  NOW!"  I depressed the bulb on the trach collar and put my finger of the hole so he could talk and he yelled, "My butt!"  Then he let me know he was on the wrong part of the bed.  The nurse came running all apologic.  A doctor came running to enter a pain order.  I grabbed the doctor to help me move him while the nurse hooked up the pain meds.  We got him situated and within a minute he was A-OK!  Dr. Rodriguez ran over all apologetic.  I apologized for yelling, and the nurse said she understood because she is a mom.

And the tube feeds have not been going well.  Derek's gut is just not functioning.  They are giving him gut motility agents, but all of the narcotics are slowing it down.  Coupled with the fact that Derek has a history of abdominal problems, this is complicated.  The critical aspect is he is not getting enough nutritian.  He needs the J-tube replaced.  We were hoping to avoid this procedure.  It is scheduled for 10:00 tomorrow.
Over the last 61 days, we have had stressful days, semi-calm days and calm days.  We have not had many consecutive stressful days, which allows me to decompress.  Unfortunately, the last six consecutive days have been high stress.  I am dangling by a shoestring.  Maybe a thread.  Need some calm days.

When Dr. West came by today he said one of these days I'll be yelling at the doctor, he will come up behind me, tap me on the shoulder, I'll turn around to see him with four guys behind him with restraints and the nurse with a syringe and I'll take a little nap.  Is it wrong that right now that doesn't sound so bad?  My strength is waning a little right now.  Come on, Lord, I need a little boost.  This Boxstep is tiring.  I know you are my dance step, but I'm tired.  I need to get out of the hallway and through the next door!
You never know how strong you are until you need it.  I've always been strong for my kids.  They've only had me to back them up and fight their battles.  This battle?  Oh goodness.

I was talking to one of the interns tonight.  He told me that some of the families are awesome.  He said some come and stay and advocate for the wounded warriors through it all, like us.  But some fly in and are only there sporatically, taking very little interest, and it has little to do with work or other family obligations, because when they are in the room, they take little interest in the warrior.  He said they are only there for themselves.  They are selfish and get what they can out of it and do not support the warriors who are going through this.  He said Derek is lucky to have us.  He then told me how awesome Krystina is and how he has seen so many girls take off, but she is made of strong stout and has what it takes to be there for him.  I know it.

That's really it for today.  Stressful day for Krystina and me.  Derek slept all day.  He had a lot of visitors and woke up sporatically for them.  Doc Ryan Pleckham and Danny Alvarado (from his Platoon - Doc was injured before him and Danny was there when Derek got hurt), My Dad (who came yesterday) and Ann.
We also got another visit from the awesome Allen family.  Chaz is a double amp, so he and his wife, the fabulous Jessica, are awesome resources for us.  When the flap questions came up, I called Jessica!  Chaz went in and talked to Derek.  Hopefully over the next couple of months he can help him.
Anyway, four hours of sleep last night.... need to crash.

Lots of love, thanks for the support, good night, God bless, love you all!  Here's to a better day tomorrow!  It WILL get better! 

Never give in,
Never give up,
Climb to Glory,
To the top,
All the way!

Boxstep Takes a Leap Forward

 

So, the Cha Cha of a few steps forward and a few steps back turned into a Boxstep with lots of side steps and some steps forward and some steps back.  One day, maybe we'll be doing the Can Can, so for right
now, it's just the Yes We Can!

Nice leaps forward today.  8 liters of fluid were removed from Derek's bloated little body overnight in the SICU.  They upped the breathing treatments, increased chest PT, stayed on him with vitals, made sure he was well watched, gave him diuretics to drain those nasty fluids, as well as so much more, and ....  it worked!  He's down 8 liters!  That's FOUR bottles of Diet Coke!

He had been diagnosed yesterday with plural effusion, and although it is not all gone, he is so much improved.  The difference in him is amazing.

He had one dip in his stats overnight, but it resolved itself, so that's good.  See, SICU was the place for him for the night because with the intense care they got him much improved. 

And his white count is . . .  (cue drum roll)  . . . 5.7!!!  Still want it lower, but wow!  He sweat it out of him!
Dr. West showed up early today and I came around the corner after getting coffee and charged at him - "Wait!  Don't gown up!  I have to talk to you first!  Follow me!"  I took him around the corner and discussed the nightmare from when Derek was first sedated.  Amazing how detailed and long it was.  After he spoke with him, he came back to us and said, "Wow.  You gave me an easy one today."  Great!  Load off my mind.  So, he gave Derek some things to think about and they will go over it tomorrow.

After that we discussed this weekend.  Dr. West said he read the notes from Monday and when he saw, "Primary doctor called to bedside; mother concerned," he lowered his head, shook it and said, "Oh, Siobhan.  I knew that was an understatement."  So I vented about the events of the weekend and how I was ticked at some of the docs, they were on my list and I was taking them out.  We discussed them, and then I got a tickle in my throat that caused me to cough.  "Oh, I got her all choked up."   I seriously love his dry wit.

I told him, "Don't start with me or I'll take you out next!"  His response?  "Bring it!" as he walked out of the room.  Of course, I followed with I would and could take him out in any battle to which there was some comment about that darned retrainted team again.  As he walked away, he fist pumped and said, "I'm taking her out!"  Okay, you win this round, Dr. West.  Don't enjoy it, thought.  I don't lose many.  And I let you win.

I was told on another day that one of the notes said, "Mother and Fiancee at bedside."  I am waiting for the day the notes say, "Mother is a lunatic.  Watch out.  She takes out doctors!"  Heck, I'm only advocating for my kid!

Best advice for today?  Keep advocating.  DO NOT be bullied by the professionals who obviously know more than you in the medical field (unless you are also medical).  Speak up.  Ask questions.  Go with your gut.

The SICU team thought Derek was doing so well I was told they were transferring him back to the ward.  Excellent!  I was happy with his progress and ready to go.  Then I was told they were having staffing issues so he would not have his 1-to-1 overnight, but he was doing so well he didn't need it anymore.  Excuse me?  One night means that's over?  I asked the doctor if he could guarantee me that he would not have another breathing episode overnight?  I asked the doctor if in the event he could not find the call button and needed to be suctioned the nurse would someone have telepathy and know when she was needed.  I asked the doctor if now that the tube feeds had started again with the J-tube and in the event he became sick, could he 100% guarantee me that he would not throw up and aspirate.  He said there were no guarantees, but did I understand the resistent infections I was exposing him to by leaving him in the SICU overnight.

Infections that can be cured by antibiotics (albiet over a long course of treatment) versus breathing difficulties, aspiration, vomiting, and possible death....  Choice is simple to me.  Err on the side of caution.

I told him that I had good veins and to please hook up the IV and start the caffeine drip so that I could stay awake all night and be his NMA (non medical attendant).  Over the weekend, the orders had been changed from family could be NMA if they were present to a corpsman had to be present at all times due to his status change.  I volunteered to be there tonight if they had staffing problems but that I needed the caffeine drip.  He walked out of the room and said they would discuss it.

With that I saw Dr. Bograd.  I all but tackled him in the hallway.  I asked him what was up with taking away Derek's corpman?  He looked confused.  He listened to my tale, including the IV drip of caffeine.  Then he smiled and said it was his order for the 1-to-1 and it was not going to change.  Derek was staying in the ICU until they found a corpsman.

Kudos to Dr. Benjamen Bograd!

We transferred back to the ward around 5:30.  I helped push that terribly heavy bed from SICU to 4c and oh my goodness and I sore and hurting tonight!

During the hand off by the nurses, I heard one say to the other, "Mom likes to know everything, so keep her in the loop."  Then Capt Summer came and hugged me!  She said thank you for being nice to the nurses!  She said I take down the doctors and fight them for my son, but I am nice to the nurses!  If I have an issue with them, I discuss it and advocate for him so I get my point across, but I have a much stronger approach with the doctors and she loves it!  I am leaving my son alone with the nurses all day.  I need to be nicer to them.  I need to make sure that they will take better care of him, so it's the way you say it and approach it.  Doctors seem to have a different attitude about them.

The tube feeds were increased to 50, but the risiduals were a bit high, so they had to keep stopping them.  We don't want him sick.  They have to stop them at midnight, or rather had to stop them at midnight for surgery tomorrow (today now).  That's a whole other issue.

On Monday I was told Derek was having another procedure on Wednesday for the washout, wound vac change, wound check, etc.  I heard nothing all day.  No one came with the consent.  I didn't know time or anything.  I had the nurses check and no one knew anything.  When the shift change happened, they were told no procedure Wednesday.

At 21:30, ortho walked in with a consent.  ???  Poor doc got an earful.  I was very upset with the ortho team about lack of communication and waiting to look for consent until so late when we were there all day.  No need to wait until that hour!  If I had left with the idea that he had no surgery scheduled, I would not have been there for the trip to the PACU at 05:30.  He likes me there.  That was completely unnecessary.  Communication.  Heard of it?

You know, I ask people for help with little things and they don't help.  Really?  Little things that would take some of the stress from me.  I just asked Krystina to change into my pjs and brush my teeth while I finish this, and she won't do it!  The nerve!

So that's it for now.  It's 01:00.  In four hours I need to be in the shower to start my day.  My stress level is through the roof right now, but the great leaps forward are helping.  We are making progress.  We will get him there.  God will get us through this hallway and through the next door.  He just needs to hold me up until we get there because I am slipping!

Back to SICU...

 

Tonight Derek is in the SICU, and not for the reason he thought he would be there.  We had expected to be in the SICU tonight because Derek was scheduled to receive his flap this morning and that requires a three day stay in the SICU.  After leaving Derek in PACU this morning, Yvette and I walked down to SICU to see where Derek was going to be and which wonderful SICU nurse was assigned to him.  We met Priscilla in the hallway and with a big smile she said she had him!

I later received a call from Dr. Martin advising that they were unable to do the flap due to blood pressure issues.  Derek has had an issue with a drop in his blood pressure under anesthesia.  So now what?  They are going to have a meeting with the plastics team, ortho team, anesthesia team and trauma team to discuss the best course of action for Derek.  This progressed over the course of the day.

It culminated in meeting with Dr. Martin in the hallway outside PACU.  He walked up and said I was a hard lady to find.  Really?  I have my cell phone, and I was sitting in PACU all day.  Is his first name Steve?  We discussed what happened in the surgery, and he finally told me what they gave him to try to even out his blood pressure.....  I was wondering why Derek was talking about kids in the hall, music playing too loud, things in the air, etc.....  They gave him ketamine.  Dr. Martin thought it was funny.  Seeing it from his perspective and thinking of it as a temporary fix, yes it was.  So after the meeting on Wednesday, we will try again on Friday... maybe.  We will see how the week progresses.

Anyway, that's the flap story.  Now to progress through the day and how he ended up in SICU....

On the way over to the hospital with Yvette for some puppy therapy, we ran into Dr. Purdue.  I filled him in on the events of the weekend and how close I came to calling him.  He said he would check things out and get back to me.  We then proceeded to Amy's office.  She is the Health Care Mediator and Mommy to Sgt Archie.  She had Bobbie and Laura Lee with her, so we had some puppy therapy while telling her what happened this weekend.  She said she would do all she could and try to find out what happened and get back to me.  Love her.

Down to PACU by 12:30.  Met with Dr. Perdue, Dr. Bograd, Dr. Gooddlet.

The good things about surgery, and the positive steps taken are Derek is now down to two wound vacs!  He has one on his right arm and one on his right hip.  They removed the x-fix from his right arm.  They did not place the piece in the fracture because it is stabilized by scar tissue.  They said they will wait for the flap.  The problem is his wrist has not moved in 9 weeks, so it will be hard to move and will need extensive therapy going forward.

Great news is his white count is down to 7!!!

Dr. Perdue evaluated Derek and discussed his breathing issues with me.  They were ready to send him back to the ward and Dr. Perdue asked for one more hour.  Within that hour, the SICU team came and evaluated him.  They did an ultrasound of his heart and lungs.  He still has a large amount of fluid behind his left lung.

The decision was made to transfer him to SICU at least for the night for increased monitoring and respiratory therapy.  He is having increased secretions, so they are giving him new meds.  They are continuing the Lasik for the fluid and also giving him another diuretic (sp? - too tired to look it up, sorry).
The difficulty with Derek's current status is that he is not quite an ICU patient but he is not yet a ward patient.  They really need a step down unit.  They cannot really justify keeping him in the ICU at his current status, but he is not ready for the ward, so they gave him a one-on-one corpsman.  The problem is when he is having the respiratory distress, the corpsman is not really qualified to deal with it, so that is when he should have been transferred back to the SICU but the resident did not make the right decision and overtaxed the nursing staff on the ward.  If this was just me being an oversensitive Mom, okay, but the charge nurse was upset.  I've seen the nurses calm, cool and collected.  It takes a lot to rattle them.  This one was rattled.

We will see what tomorrow brings for the SICU placement and getting him back to the ward.
As for his tummy issues, the doctors today say that no way was the J-tube in his stomach last week.  It could not possibly have flipped until Friday at the earliest.  If it had gone sooner, the tube feeds would have been coming out the G-tube.  They restarted the tube feeds tonight into the G-tube, so we will see how he tolerates them.  They had to place the J-tube on August 30th because he was not handling his tube feeds into his G-tube, but that was three weeks ago.  He might have improved enough now to tolerate it.  Let's give him a chance before putting him through that procedure.

What I am upset about is that he needs nutrition and calories in order for his body to heal.  For wound care and muscle tone and all over body health, he needs it.  He is not getting it.  They started the tube feeds, so now let's see if he tolerates it, and if he does, great.  If not, then let's act fast.

So, tonight Derek is in SICU after being with Priscilla for the evening but for a different reason than we thought (I surely did not miss the sounds of the SICU).  His nurses tonight are the awesome Tom Diggs and Leah Stanley.  I feel comfortable getting my five hours knowing that he is being contantly monitored.  I will be back at the hospital at 06:30 tomorrow morning to meet with the doctors (Dr. Dan - who finishes his SICU rotation this week), and find out what the next step is to get this kid better!  Enough is enough already!

An extra special thank you to Jessica Allen for coming out of her way to drop off a delish dinner to Krystina and me.  It is great having someone who has already been through this process to talk to and cheer me on.  This is exhausting and emotionally wretching.  I've held myself together pertty good for the last 59 days.  However, over the last two, I have found myself on the verge of breaking down more and more. 

I have had to walk away more than usual.  Talking to one of the doctors today, when he was giving me the PC answers when I was describing one of the screw ups from the weekend, I said, "Don't.  Just don't.  Don't go there.  Don't say that.  I do it to my clients when judges screw up orders or don't do what they are supposed to do.  I know what you are doing so just stop because I just cannot hear it right now."  I couldn't hear it.  I apologized to him and gave him a hug, and he showed me pictures of his adorable baby girl, so I know he forgives me.

For everyone who has been through this, you know.  You know the hell we are living.  For everyone looking in from the outside, this is the war on the homefront that is not publized.  Health issues with loved ones are awful.  I've lived them.  I've watched my children suffer through illness, some of it life threatening.  I sat with my grandmother through numerous injuries, illnesses and the end of the life.  I watched my mother battle cancer, pnuemonia, and made the call at the end not to code her.  Health issues are not new to me.

But it's even harder when it's your child, husband, brother who was full of life, healthy, in the best shape of his life seconds before being struck down by tragedy in the line of duty protecting the lifestyle and freedom that we all cherish....  AND most of America goes about their life never knowing about his daily fight to simply take his next breath.

For all those who are going to walk this road in the future, when that door to your old life closes, may God be with you and guide you through the hallway until you reach the safety of the next door to your new life.  That new life is a wonderful life full of promise and new beginnings.  It's this hallway that is pure hell. 
I hope Derek reaches the door soon.  My back hurts and Krystina's feet hurt.  I won't falter because I've got lots of love and support holding me up, and I've got God as my rear guard, but I'm getting tired.  I will continue to be strong and I will continue to keep fighting as long as Derek needs me.
Derek has a great attitude.  He is disappointed today due to not receiving the flap, and due to being back in SICU due to breathing issues.  I tried to reassure him as much as possible, and he said he will get through it, but he is tired.

So, here's to better days.  It's got to get better!

Good night, and God bless!

Nurses Rock

 

First of all, I need to send a huge thank you to Karin and Bob Ruppel.  Thanks to their unselfish act of donating a van to Derek, I have a way of transporting him to and from home when he becomes an out patient without having to worry about renting a van (which I have been told is a lot of paperwork and a hassle).  It takes a huge load off my shoulders.  They are wonderful people.  Thank you also to Brian for making this happen.

This weekend was horrible. 

The simple parts were his white count hovered from 10.4 to 11 and then back down to 10.  The doctor came in and changed the wound vac on his right hip because it stopped working.  The awesome day nurse, Sarah, suggested lasex (sp?) to help reduce the fluid retention and it started to work!  And Yvette came for the weekend.  Other than that?  I think I seriously need that restraint team.  Derek suffered, and I am on a rampage.

I walked in on Saturday morning to a respiratory emergency.  It happened four more times on Saturday.  He desatted several times and he needed deep suctioning, breating treatments, and constant monitoring.  More than the ward could provide.  He also put out pink froth, which I had been told in the past was not a good sign.

Due to pain in his ribs, an EKG was ordered and it showed a positive inversion of the T wave so they ordered cardiac enzymes and a chest x-ray.

A decision was made by the day team that he would be transferred either to telemetry (due to the heart question) or the ICU due to the breathing issues, but that it would be left to the doctors on call overnight.  They came in at 19:00 and said they would make the call.  The bed was set up, things were unplugged, we were packed and waiting. 

Two,Hours,Later....

The charge nurse was on the phone screaming at the doctor that Derek needed to be in the ICU because he needed more than the ward could provide and a decision had to be made. 
No decision.  They came and spoke with me.

Finally, at 21:00, they said they were leaving him where he was because his stats were fine and the nurses could handle it.  ????

The charge nurse, the awesome LT Bennett, did everything she could to get Derek to the ICU where he belonged.  She made phone calls, she yelled, she did all she could.

Derek's nurse, the fabulous Jenea Maxwell, and the corpsman Willie Allen, stood at Derek's bedside all night taking care of him.  She did the work of an ICU nurse with two-on-one care.  Derek's stats dropped to 89, and hovered in the low 90's most of the night.  I sat there staring at him all night, watching his nurse and the corpsman do their thing.  Every time the idiot doctor walked in, the comment was, "he's doing okay now."  Well, you should have been here ten minutes ago!  Maybe we should have left him blue for you, idiot!  I guess going blue four times during the day wasn't enough and constant care all night isn't enough!
The orders were changed that Derek is to be suctioned every two hours due to his increased mucus plugs, and they are putting a humidifier in his room.

On Saturday, his tube feeds started coming out his G tube (they were going into the J tube), so they did an x-ray of the abdomen, and it showed that the J tube was in the stomach.  They called IR, but IR decided not to do anything and let him sit there not getting any feeds.  Cue the rage.  Then Sunday morning IR said to start the tube feeds to see if they made him naseaus.  Basically, I was told they were trying to purposefully make him sick.  The cooler heads of the few ward docs I trust prevailed and IT scheduled the procedure.
What a clustermuck.  The procedure took over three hours and failed miserably.  Derek felt most of it, and he said they were yelling at the woman to increase the pain meds, which didn't work.  They could not replace the J tube, so he is getting no tube feeds.  He only has a G tube and probably won't have a J tube until Thursday, and they cannot let him eat that much because his stomach has not been able to handle it.
Dr. Cho said it is clear from the chest x-ray from LAST SUNDAY (the 18th) that the J tube was in his stomach.  Not possible.  If it was, the tube feeds would have been coming out the G tube, right?  I am not up on all the medical jargon, but I think I understand that part, and that is what was explained to me by another doctor this morning.  I also thought a chest x-ray didn't go low enough to show the entire J-tube, and the doctor this morning confirmed that.

Now we get back to the ward at about 19:00.  Dr. Rodriguez reviewed the x-rays and okayed him for drinking and the use of the G tube for meds, as long as not much else went into his stomach.  But since it had to be put into the system as an order, we had to wait for the nighttime on call doctor to actually enter it into the system.  I went and got Derek his milkshake because Dr. Rodriguez had okayed it, but we just had to wait until the order was entered.  Good luck with that.

The nurse paged and called the on call doctor for six hours.  At midnight, he was NPO'd because of surgery today.  The order was finally put in around 01:00.  Had we listened to this doctor, he would have missed his milkshake and his night meds.  Thank God his nurse has a brain and I am sneaky.  Derek enjoyed that milkshake, and she gave him his meds based on Dr. Rodriguez' oral order.

I need to sit down with Dr.Perdue and get this straightened out.  As of right now he is getting no tube feeds, no nutrition beside the IV, no nothing.  I am furious.  He wants to get strong and get better, and these doctors need to get their heads out their respective butts and get with the program!!!

In the PACU this morning at 05:30 for the flap and other procedures, Derek revealed a horrifying tale from when he was in the medically induced coma (and it explains so much about how he was acting - I need to talk to Dr. West).  He said it because they were talking about keeping him sedated for 24 hours after the flap and he panicked.  He does not want to be sedated.  It was a tale of horror and terror from which he could not awake.  It is still so vivid to him. 

After PACU this morning, Yvette and I walked down to CCU to see where Derek will be after the surgery and who he will have for his nurse.  Priscilla!  Love her!  She came up to us and told us it was her, and I started crying!  The comfort zone.  I felt like Derek was finally safe again.  I love the nurses on the ward, but those overnight docs scare me.  At least for the next few days, I will rest easy.  Then we can try again.
This is quite the journey.  You must be hypervigilant and ever watchful for everything.  They slip in and try to talk to Derek about procedures and medications when I am not there, and he says "yes" when he doesn't know what he is talking about.  He almost said "yes" to methadone again!  Hell no!  I nixed it.  He is with it and can discuss any procedure, but with all of the narcotics and not being aware of all of the history he has been through, he still needs me.  He can decide who to call, who to allow into his room and when with respect to visitors and VIPs, but he still needs someone to help him with the medical end of this.  This is a horrible battle, but one we will fight to the end.

To the top, Derek.  All the way.

Ward docs dip their table leg, house of cards nearly topple

 

After a day of difficulty breathing and four emergency visits from respiratory, the on call ward docs do not feel it is necessary to move him to icu. Even though the charge nurse fought valiantly, they said no.

she assigned Derek a nurse who only had one other patient who needs very little overnight. And there is the corpsman in the room all night. Respiratory treatment was increased. And mama is sitting here all night just in case.

More tomorrow when this is resolved and I'm not updating on my phone.

Happy Two Months Alive Day and Using My Big Mouth

 

Today we celebrate TWO MONTHS ALIVE DAY!

This journey is exhausting, but it is well worth it to come out on top.  My best piece of advice for today is stay vigilant and DON'T STAY QUIET!  Today's entry has a couple of times where I had to open my mouth to get things done to protect Derek.  Again, I don't know how these kids who have no one or have someone who is afraid to assert him/herself gets by.  I have a big mouth and I am not afraid to use it.

I met a fabulous family today.  Jessica Allen, her husband, Chaz, and their two beautiful daughters came to visit.  Chaz is a wounded warrior who is in rehab now.  Jessica gave me such hope.  What a fighting spirit!  Getting Team Allen and Team McConnell together would cause some serious trouble!  Watch out, WRNMMCB!

Derek had his 29th surgery today.  It was a long one between PACU and surgery.  He went down to PACU at 05:30 and returned to his room at 13:00.  When he returned from PACU he desatted again.  He vitals dropped.  He couldn't breathe.  The nurse was on it immediately and suctioned him.  That helped.  Derek said to her, "Thank you for basically saving my life."

Derek later asked each doctor who came in if an order could be entered to deep suction him while he was still in PACU.  I will make sure I get to PACU from now on and check with him if it is needed.  I thought that he would be okay there.

Respiratory was called to check on him and give him a breathing treatment after the incident.  She was an idiot.  This is the one who asked Krystina to lift Derek by herself the other day.

His nurse was working on his lines, I was straightening up his tray, Krystina was reading, and Derek was drinking, so he had his PMV (Passy Miur Valve) in place.  He cannot drink without the valve for fear of aspiration.  The cup was sitting on his chest.  The RT did her thing and turned to leave.  As she did, she stopped and yelled at the nurse for the position of the oxygen tank.  When she left, I commented to the nurse that there is a right and wrong way to say something to someone, and that was definitely the wrong way.  The nurse said that with Derek having difficulty breathing, everyone's attention was on him and not on the tank.

Derek continued to drink, and then he tried to speak to us.  He banged the bed and we all turned.  This was over a period of not more than two minutes.  He waived his arms and I asked him what happened to his valve?  The RT had taken out his valve!!  Derek could have aspirated!  He was having difficulty breathing, and she saw that he was drinking, but she removed his valve and left the room!  She had no reason to take out that valve at that minute!  We all had our backs turned and never noticed what she did.  The nurse sent me out to tell the charge nurse immediately and told me she would write her up.

I complained to the charge nurse and LT McMahon was in the room within ten minutes.  Less than one week on the floor and I've met with LT McMahon, the assistant to the floor chief twice already and reported TWO respiratory therapists.  Respiratory is going to hate us.  Oh well.  They need to step it up and do their jobs properly!  Maybe it's time I went to Respiratory myself.  I want Eliana or Angela.
I made it known to LT McMahon that the nurse and I were not happy about what she did.  It was clear Derek was drinking and she should never have removed the valve, especially given what had just happened, without taking the drink away and without telling one of us!  LT McMahon told me that it would be handled, and he told me that the problem from last Saturday was dealt with. 

Oh, the bitch of Room 431 is on a roll.  Make it with taylor ham and we'll have lunch!

But surgery went well.  The big, bad butt wounds that have been giving him all the trouble are finally closed!  Woot!  They washed out the arm and replaced the antibiotic beads.  The flap is scheduled for Monday, barring any problems over the weekend.  White count is 10.5, so unless it spikes over the weekend....  pray not.  Derek is most concerned that they will mess up his tattoos when they take the portion for the transfer, but they have promised not to touch any of his precious tattoos. 

Dr. Dan came for a visit!  I had Dr. Randy and Dr. Dan together again!  Love those guys.  I wish I could keep them working with Derek until he is discharged.  We talked about Derek's pain med experience, since Randy is now on the pain service, and Dan told Randy that Derek is a "methadon't" patient.  And the Sec of Defense walked by while the four of us (Krystina too) were chatting in the hall.  No big deal.
Derek starting singing, "Let's Get Physical" and told Krystina to get his bands so they could do his OT!
They did a chest x-ray because of the desat issue, and it was negative for issues that might have caused that problem.  The pneumonia is moving in the right direction, but it is still prevalent.  Derek is alert and asking a lot of questions.  He is very with it.  He is aware of his surroundings, asking for people he wants to visit (now that he is off droplet and on the ward it is a lot easier to have visitors), making phone calls when he has enough breath to speak for longer periods of time, and generally taking a larger role in his care.  However, when it comes to making decisions and signing consents, he still wants no part of it.  He said I am his good luck charm, and he doesn't feel like he can make those decisions, yet.

An example of another problem that needed my big mouth was with dietary, two days in a row.  I called to order dinner.  Derek is on full liquids.  His stomach cannot handle solids.  Full liquids means milk shakes, puddings, yogurts, apple sauce, etc.  If he was on a clear liquid diet, it would be juices, broth, etc.  I ordered him a milk shake and pudding.  I was told he was on clear liquids and couldn't have it.  He argued with me!  I walked outside and got the nurse.  She pulled up the orders and called dietary herself.  They argued with her, but she prevailed.

Derek met with the VA rep yesterday.  He got some excellent information.  He is entitled to apply for his SSI benefits now.  He has been on my case to get right on it, because he wants Krystina and me to have that benefit, and he wants me to have help supporting my kids at home.  He knows I have been doing this on my own for years without help.  Derek is lying in a hospital bed fighting to get his life back and is worrying about his sublings having enough to eat, clothes to wear and their necessities met.  Derek is a good man.
Shhhhhh..... don't tell Dr. West!  I spelled my name wrong on one of the consents, and I got the date seriously wrong.  I said August 20th.  It's a good thing I'm not the patient!

Derek is truly inspirational.  I'm just along for the ride.  I've been forced into this as a product of a bad situation.  I was craving Chinese food, so Krystina and I ordered some tonight.  My "fortune" said:  "courage comes through suffering."  If that's the case, Krystina, Derek and I are truly a bunch of brave mamma jammers at this point, but especially Derek, because Derek has suffered greatly.  But we already knew he was a brave, wonderful man.

Remember:  "Good friends are like stars. You don't always see them, but you know they are always there."  I thank God for all of the great friends who have come forward to help us during this journey through hell and made the road a little easier.  For those who have made the road rockier, please stay out of the way.

"Whenever God Closes One Door He Always Opens Another, Even Though Sometimes It's Hell in the Hallway."  We are in the hallway right now, but the door is getting closer. 

"Worry looks around, sorry looks back, faith looks up."  Don't feel sorry for Derek.  He doesn't feel sorry for himself.

When life gives you lemons, get some tequila and salt and I'll be right over!!!

Good night, sleep tight, Thank you for everything!

VIPs, Idiots, and The Dance Continues

 

When I left to come down here, I said I would be home well in time to attend the retirement party of Judge Thomas Zampino.  The party was tonight.  That was my intention.  I had no idea what I was facing.  No one did.  I never expected not to be there for my kids when they went back to school.  I never expected to be gone so long.

Derek still has a long road ahead.  We talked to Dr. Perdue today about Polytrauma Rehab before he goes to Amp-Rehab to get his prosthetics.  He may not be well enough once the surgeries are completed to get right into having the prosthetics fitted and starting daily rehab.  He might still need time to heal.  They only do that at four facilities in the country - Palo Alto (CA), San Antonio (TX), Richmond (VA) and Tampa (FL). 

Derek said he does not want to leave Bethesda and will be ready.  He said he will "improve faster than anyone with these injuries."

Dr. Perdue told us we still have weeks before the surgeries are complete so he has time, but it is something for us to start thinking about.  Richmond is the closest to home, so that is where he will go if the need arises.  I would hate for Derek to leave Dr. Perdue, Dr. West and the rest of the staff here in Bethesda.  He has come so far because of them, including back from the brink of leaving of us forever.
White count was slightly up today, which is not unusual after surgery.  It was 13.7 yesterday afternoon and 12.3 this morning.  He was started on the Fentanyl patch for pain at 25 mg on Tuesday, and they upped it to 50 today.  This gives him a basil rate so he does not have to push his happy button as often.  Dr. Randy Mielky is on the pain service now (he was previously on the ICU team).  He came to see Derek the other day and when he left Derek said, "He came back.  They always say they will come back and never do.  He did."

Derek received a visit today from General Raymond Odierno, Chief of Staff, US Army.  His wife has a therapy dog, Tootsie.  We met her the other day.  Derek was honored by the visit.  He said he got to talk to the most important person in the Army and it was the highlight of his day.

For lunch, Derek wanted vanilla pudding.  I called and ordered it for him at 11:30.  He then asked me for a strawberry milkshake from McDonald's, because he thinks the hospital milkshakes are awful.  Their food overall is not that bad, but their milkshakes need help.

Derek is only allowed liquids because his stomach is not processing food, and whenever he has solids, he gets sick.  They are going to give him arythromiacin (sp?) to help his stomach mobility.  I got his milkshake, and the pudding did not arrive.  I called again, and it still did not come.  Derek slept and had a busy day.  He really did not look for it until 16:00.  I called them at that time for the third time.  They told me they were on break and to send a nurse down to get it.  Seriously?  Are they kidding?  The nurses have nothing better to do then to run down there and pick up a pudding they were too lazy to deliver for over four hours?  I asked for a supervisor and the pudding was delivered within 15 minutes..... twice.  We got a vanilla and chocolate pudding the first delivery and a chocolate pudding and milkshake the second delivery.  Idiots.  You can't fix stupid.

Derek's arm was hurting him earlier, so Krystina asked him a couple of times if it was sore.  He said, "If I get a massage, then yes it is sore."  He is such a brat.

Derek realized today that he had nothing on the left side and was concerned.  Krystina is so amazing.  She told him she loves his little nub on the right and thinks it is cute, and that the left is no big deal.  She explained to him in detail what the doctors have been telling us about how prosthetics can be built for hip disarticulations, and that he can walk again.  It is not as easy as if he had something there, but that it is possible.  She is such an amazing young woman.  Love can do wonderful things. 

So many wives, mothers, girlfriends, etc. leave for much less, but this amazing young woman is standing by Derek no matter what.  She catches little cat naps in uncomfortable chairs and helps Derek with his OT and PT every day.  She makes sure that he is comfortable, gets him his ice packs, calls for the nurses, listens intently to the doctors and nurses, and keeps me sane (well, the jury is still out on that one).  I couldn't do this without her, and neither could Derek.

I had a migraine today, and I used one of Derek's ice packs.  The nurse said they would get us more and to use whatever I needed.  Derek is using a lot of ice packs because he is sweating profusely.  His fan is not helping, so he has not been using it.  Didn't even ask for it until today as an aside to see if it helped.  But when I took an ice pack he said, "I'm watching you, Mommy.  You better replace it!"  Brat!  I did go out and hunt down the pain in the ass corpsman, Brian Allen, the Peter of this floor with a sense of humor to beat the band, to get me some more.

Dr. West walked in to me with an ice pack on my head and my headband holding it in place.  The look on his face.  Krystina and I dissolved into hysterics.  Derek said we were weird, and he agreed!  I'll go curl up in the corner and cry, now.  *sob!*  Okay, I'll go quietly.  Let me just run out the backdoor first to avoid the restraint team!  But he said he didn't need the show of force, yet.  Psst!  If you see them coming.... let me know so I can hide!

Dr. West, keep teasing me and I have two words for you.... bunny hats.
Derek got into his wheelchair again today and he is getting better at driving it.  He helped pull himself over when they changed the sheets!  He got Krystina to work his arms for his OT and they are getting stronger!

He also had a hearing test today.  They found a little blood in one ear, but no holes.  His hearing is a little diminished, but that could be because the bed and oxygen are so loud.  The recommendation is to repeat the test in the quiet of the lab.  As it is, he can hear fine when anyone speaks to him, so we are not worried at this time.  As long as there are no holes and no obvious sign of injury or hearing loss, we can await a formal test.

So, overall a good and productive day.  We had a lot of laughs, Derek made good progress, I avoided the restraint team, and we moved forward.  The dance is going forward.  The steps backward are getting smaller.  As long as this continues, we will be on the road to recovery and out of the those woods in no time.

For everyone who is a little stressed, I am passing this little tidbit on, because it definitely worked for me today, and we all could use more calm in our lives. I looked around the kitchen of the Fisher House tonight when I came in to see things the other families and I had started and hadn't finished, so I have managed to finish off a bottle of Merlot, a bottle of Chardonnay, bodle of Baileys, a butle of wum, the mainder of my Valiuminun scriptins, an a box a chocletz. Yu haf no idr how bludy fablus I feel rite now. Gud nit.  eye blody luv u!

The Glass is Half Full... Fill 'Er Up!

 

05:00 mornings suck.  Just saying.  On the ward, first case moves to PACU around 05:30.  Which means I need to be there by then.  In the ICU, there is not PACU because the patient goes straight to the OR and back again, but on the ward, he must go to PACU before and after the OR, hence the early start.  Since I insist on having a chat with the anesthesiologists and other docs, I have to be there.

This morning the anesthesiologist had a student with her (WRNMMCB is a teaching hospital) and she was getting information from me.  She turned to her student and said that it helps having the significant other with the patient because they are a wealth of information.  If that wasn't so creepy and disgusting because he is my SON, I might have felt complimented.

I sat with Derek until they took him back.  Surgery went great.  They washed out the arm and replaced the antibiotic beads.  They will do the flap on Monday and we will be back in the CCU/SICU for three days.  Wound vacs were changed, the skin graft was checked and determined to have taken well.  The wounds on his backside were left alone because they placed A-cell on Monday and they wanted to leave it alone for a couple of days to let it work.  Dr. Bograd and Dr. Perdue think it will do the job.

When Krystina and I returned to the PACU after his surgery, I was discussing Derek and his response to different medications with the nurse and she asked me if I was nurse because I was well versed in the medications and reactions.  I have learned a lot, but I could never get my head around all of this enough to do what they do.  They are simply amazing to me.  They keep their cool in situations when my heart still pounds.  As Derek vomited so intensively the other day, I felt my pulse race and rushed to get the basin, but the nurse calmly went about getting the basin in place and sunctioning his trach to make sure he didn't aspirate.  I could never do what they do.

After we left PACU, we saw Dr. Perdue walking down the hall and rushed to greet him.  Capt Perdue is one of my favorite people in that hospital.  In the beginning when he was bringing us nothing but bad news, my sister said "chicken man was going on the grill."  No way.  Not any more.  But it was funny that Krystina said Dr. Perdue seems to have "taken Derek under his wing."

Infectious disease said we are on the countdown to getting rid of all of the antibiotics..... could it be?  Can we hope?  No more ugly yellow gowns?  Can Derek finally play with Sgt Archie?  White count is down to 9.8, so it just might be!  He is sweating like a champ, so he is definitely fighting something!
Today was a super busy day.

PACU with Derek at 05:30.  Back to shower.  Got back to the hospital and picked up mail downstairs.  Ran up in time for doggies and donuts, the weekly Red Cross family event where they serve coffee and donuts and the service dogs attend, especially Sgt Archie, but before we could walk in the door, got called to PACU because Derek was out of OR. 

Got up to the floor and visited with Sgt Archie for a few minutes before the Washington Redskins Cheerleaders arrived (pictured with Derek and Alan Kruchkoff of the Adopt-A-Soldier-Platoon).  Derek said they were naked.  He was glad they had to put on the yellow gowns.  He said he does not like it when women objectify themselves.  Just his opinion.  He was happier when he heard that some of them are studying to be doctors and therapists and that they have full-time jobs, and that they are not just cheerleaders.  He hated to think that they just parade around half naked.  Derek is very old fashioned in a lot of his thinking.

Then it was post-OR time with Derek for a few minutes before running out to lunch so Derek could rest.  We went to lunch with four members of the Adopt-A-Soldier-Platoon (Alan and Kimberly included!).  We were joined by a Lt Col who was a wealth of information.

While we were out, Sam from OT came by, some doctors visited, and a member of the VA came by (he is supposed to return tomorrow at 08:30).  This is why I do not like leaving during the day, but every once in a while I do need a break.

Derek is having a little battle with Sam right now.  His "happy button" is on a little black arm.  When he went septic, he swelled up and could not work the PCA (patient controlled analgesic).  They built him a device that attached it to the bed so he could just hit it.  Sam thinks he could handle the button on his own now without the arm.  I agree.  I have tried convincing him over the last couple of days to let her take the arm and attach the button to the bed by the clip.  He said we will negotiate tomorrow.

After lunch, there were more doctors, RT, even more doctors, (I took care of that flow of information problem, didn't I?), a meeting with the head of 4-central, 4-west and an enlisted gentlemen about the RT situation from Saturday night (yes, I filed a complaint), etc. 

Dr. West came by and chatted with Derek.  I gave him this blog.  Ut oh.  Now he has access to my inner real thoughts.  I don't know if that was such a good idea.  If he was threatening the restraints before....  Dr. West, if you are reading this this, please be kind.  mmm, k?  It's only temporary insanity.  Yes, I know.  Temporary?

But there is a corpsman on the floor who is willing to help Dr. West if he shows up with the restraint team.  He wants to put the gloves on me!  Brian Allen is his name.  We were talking about drinking and odd names of drinks.  Don't ask how THAT came up.  But I said I can handle any shot, except that one called peanut butter and jelly, but I'm a lightweight because three shots and I'm done.  He made the comment that size does matter (meaning my weight).  With that another corpsman walked by and got the wrong idea.  Seriously?  He thought we were talking about something else!  I'm starting to have fun on this floor.
The best part of today is human kindness.

Derek said he realizes that the glass is half full and he has so much more available to him now than he had before.  But then he also said he had to lose his legs to have all these cool things happen to him.
For example, Phil Simms and Inside the NFL (or something like that) invited Derek to have lunch with them, and Phil Simms invited Derek to watch a Giants game in the broadcast booth with him!

Derek received a call from Chuck Lidell, one of his heroes.  He has been invited to attend a UFC fight as his guest.

Tom Mautone of the North Caldwell Police Department with the help of my brother-in-law, Brian Maglio of the Roseland Police Department are setting up a pasta dinner fund raiser for Derek on October 16th at the North Caldwell Fire Department.  The North Caldwell Police Department set up the Friends for Derek McConnell fund for Derek and family expenses that might arise as a result of this event,

Tom has been close to our family since my children were small.  He watched my children grow up.  When Derek was a rebellious teenager, Derek went to Tom.  Tom talked him down many times.  When Derek was arrested at school, Tom was the arresting officer and he was the one to talk Mom down.

And Brian.  What can I possible say about Brian?  Married to my sister, father to my awesome nephews, an all around great guy.  Took my daughter to her Father-Daughter Dinner Dances when she didn't have a father to take her.  Brian has just always been there.

Brian is doing the Tough Mudder competition this year in Derek's name.  His friend Bill and his group from the Mahwah Police Department are going to do it in Derek's honor and get shirts made with Derek's name on it.  We told Derek about it, and he wants one of the shirts.  I have to remember to ask if I can get one.

The Little Vikings Football Team is selling shirts with "Never Give Up, Never Give In, PFC Derek McConnell" on the back at the football games and donating the proceeds to Derek and family expenses.  They are also taking up a collection at the home games.

Brian called today and told me that someone donated Derek a van.  A Town and Country van outfitted for a wheelchair.  It is in very good condition and is perfect for him once he is able to get home for a few days.  He can get his wheelchair on board and get out and about!  A woman was looking to give it away because her mother had passed away.  She chose Derek out of the stories she had heard.  This is just what he needs right now.

Contributions have poured into the Friends for Derek McConnell fund. 

I am not one to ask for help.  As a single mom for so many years, shopping at bargain stores, living with my mother because I couldn't afford a place of my own, etc., I never asked for hand outs.  I did it on my own, except for living with my mother.  That's family.  That's different.  Family sticks together. 

People have come out of the woodwork to help.  Those who truly care about Derek, even strangers who have good hearts have come forward and shown how much God has influenced them to help this kid.
People are sending care packages, cards, donations, etc.  Some have been returned to them, and I do not know why.  I checked downstairs today and the liason office said that sometimes the dock does that and they do not understand it.  There have been packages put aside and misplaced, but they are getting through them all.  Hopefully, they will all find their way to us.

God works in mysterious ways.  I don't know what God had planned or why this happened.  I have heard people ask "why me?"  I have heard people say "why my son?"  I don't recall doing that during this time, but I might have.  I have had a strained relationship with God over the years, but that is just the way it is.  I have my faith, and I have my beliefs.  I know where I stand, and God knows my heart.

I truly believe that God has great plans for this kid.  He could have died so many times in his short life but he didn't.  I don't understand why he has had to suffer so much, but there has to be a reason.  Derek has accepted it, so I won't question it.

This is very humbling to me.  All of this is.  Seeing my son go through all of this is very humbling to me.  But most of all, hearing him say that he has so many options and that he will take advantage of them and make the best of his life is truly inspiring.

Quickie

 

I don't remember if I ever told a story about a visit from Dr. West the week Derek went septic on us.  In an attempt to make Derek smile, I had drawn a large smile face with the tongue sticking out on the mask that we had to wear because Derek was on droplet precaution.  It didn't work.

I sat down across from him and started to read my kindle, completely forgetting about the smiley face.
In walked Dr. West.  Derek was out cold.

He sat down across from me and gave me a strange look.

Dr. West - "How YOU doin, Mom?"
Me - "Great, doc.  How YOU doin?" (in my best Italian accent)
Doc - "Heard you had a tough week."
Me - "You could say that.  Almost lost Derek.  Almost killed a nurse.  Would have been justifiable homicide.  Could have gotten off for temporary insanity."
Doc (Giving me a questionable look) - "Temporary?" 

The House of Cards

 

Handing this on a daily basis is like building a house of cards.  Each team is holding a leg of the table and trying to keep it balanced so that the house of cards does not topple over as Derek tries to build the house as he gets better.  We have several different teams involved, some of them with more say then others.  We have the trauma team, the surgical team, the pain team, the infectious disease team, and me. 
Also involved are the orthopedic team, the urology team, the occupational therapists, the respiratory therapists, the physical therapists and the nurses who are handing Derek the cards and keeping him balanced.  I am holding a leg because I gave him the foundation to make him the man that he is and I know him like no one else, besides maybe Krystina.  I know how he acts when he is sick.  While I do not know the medical jargon, I can add something to the playing field by bring the human side of Derek in and reminding them of how certain medications affected Derek when used before.  The file and notes are already quite thick, and if they haven't read everything or are not aware of certain aspects, trust me, I will bring it up.

Case in point, the methadone they wanted to give him again this week.  We do not need La La Land Part Two, thank you very much.  Although it was a comedy, it was also a horror film.

It took me two days, but I was successful in convincing them to stop the Tylenol drip.  I understand the importance of weaning him off the narcotics.  I want that as well.....AFTER the infections are under control.  At this point, fevers are an important diagnostic tool (thank you, Dr. Dan).  Once I went through the infectious disease team, surgical team, trauma team and back to the pain team, they stopped the Tylenol drip for a couple of weeks.  Derek doesn't tend to run fevers as it is.  A 100 degree fever for him is serious.  Tylenol will mask that.  To tell me that if a fever is severe enough it will break though does not work for this kid.  Tylenol is just not a good move in this case.  Hence the importance of my leg in this house of cards.

Derek mentioned today that he felt bad that Krystina and I left our lives to be there for him.  The nurse was in the room when he said it.  Before Krystina and I could answer, she explained to him how important it was for his healing to have us there.  She explained that guys who had no one took longer to heal.  They didn't have anyone to go to bat for them in cases when medications were ordered when they maybe shouldn't have been, or when doctors walk in and patients are asleep, they just leave.  If a family member is there, they can actually get some information that helps the patient.

I took care of the flow of information problem today.  I got in touch with Dr. Moore.  Very nice.  And Dr. Perdue, who is my hero since he saved my son's life anyway, gave me his card with his email and blackberry number so I can call him anytime.  I will not abuse it.  I will only use it if I absolutely need to, like if I have not seen him and absolutely have to have information.

Sam, our favorite OT, made Derek a splint because one of his fingers was starting to claw.  She took the wrap off his right arm today, and it actually looked a lot better than I thought it would!  Derek was upset by it, but Krystina and I were relieved.  The doctors described it a lot worse than we actually saw it.  The "shark bite" was was a lot smaller than described.  He is also getting some movement back in his fingers.  The flap is scheduled for next Monday.

MJ, our favorite PT, got Derek into his chair and he drove around the ward!  Considering the last time he drove he crashed Mike's car into a parked car and ended up in some bushes, he did a lot better this time!
So Dr. West told us he is going to show up with his restraint team one of these days.... was he kidding?  We will see.

Dr. West is being evaluated tomorrow, and we told him to send them our way.  He walked away shaking his head and laughing.  Really?  Do we scare him that much?  We love Dr. West!  We would be very complimentary!  Just read my blog, Dr. West.

The hospital is in the process of being accredited.  Walter Reed and National Naval Medical Center were both re-accredited within the last year, in April and November, if I remember correctly.  But when they merged, they technically became a brand new hospital, so it has to be accredited as Walter Reed National Naval Medical Center Bethesda.  They need to do something about that acronym.  It's a mouthful.  But if the evaluators want info, talk to me!  Or read this blog.  I have a big mouth.....  I'm not shy!

Besides getting out to drive his wheelchair, Derek had a quiet day.  He slept a lot.  He is fighting something.  Although his white count is only 14.3 and he has no fever, Derek does not always run a fever.  He has been sweating a lot, which is what he does.  He was very pale, his eyes were black, he was very tired and he sweat a lot.  That to me says he was fighting something.

He also was very sick to his stomach, so they cut off his food and said liquids only.  He is still getting the tube feeds, so he is getting the calories, but he stomach is not ready for the food.  I walked in to find out he was sick overnight, and this morning was met with a good morning vomit.  He took it as a set back, but Dr. West was able to convince him that it wasn't.  Another reason we love Dr. West.

Krystina has been a real blessing through this journey.  Without her, I could not have done this and stayed so strong.  She makes me laugh, keeps me grounded, shows me what is important, and gives me an avenue to vent so I don't commit justifiable homicide (although I would get off for temporary insanity.  Yes, Dr. West... I know, "temporary?").

So, surgery tomorrow for a wash out, wound revision, dressing change, wound vac change, the usual.
Have a good night, everyone.  Thank you for your continued support, prayers and good wishes.

Chocolate and Chuckles

 

Today was a pretty good day for Derek.  His spirits were up, he rocked it out in surgery #27, and he was visited by a congressman.

Congressman Rodney Frelinghuysen from the 11th district in NJ (our home district) came to chat.
Derek described some of his experiences in the hospital.  "They sit there and start screaming at me!  Like I cannot hear!  Or they come in in then middle of the night and say 'Derek, Derek!'"  He made his voice get very high when he said his name and with the valve it sounded so funny.  He had the nurse in stitches.  They talked about their experiences in the war, with Congressman Frelinghuysen discussing his time in Vietnam and how that affected him.

Derek also stated that before this incident, he had said that if he ever lost his legs, he would have just wanted to die.  But now that it happened, he is just happy to be alive.  His whole perspective has changed, and he said his priorities are different.  I love his attitude.

Congressman Frelinghuysen left us with bags of M&M that Derek immediately tore into.  After that, he had a chocolate donut.  He had chocolate all over his face and fingers!  Just like a little kid again!
It was a wonderful visit, and we were very happy to see Congressman Frelinghuysen.  What a nice man he was.

Surgery....  Washout of the arm, and it looks good.  On track for the flap next Monday.  Infections are getting under control, and they hope to stop all antibiotics in another two weeks.  Wound vacs were changed, incisions were checked, wounds were debreaded and closed a little more.  Also, Derek's trach was reduced from a size 8 to a size 6.  He said he can breathe better now, and it is easier to talk.  Although.... I heard all this from Dr. Gooddlet and the nurse NOT the surgeons as I would have done if we were still in the ICU.  The only team to come and talk to us was urology.

And.... we are off droplet!  Yay!!  No more masks!  *happy snoopy dance*  Yes, I'm a geek.
When Derek returned from the PACU (our first trip there), the first thing he said was to Krystina - "you look beautiful."  awwwwwwwwwwwwwwww

Dr. West came in and asked how things were going, and we relayed our little incident from Saturday with the RT and me kicking her out of the room.  He hung his head and shook it from side to side making Krystina lose it.  He will commit me before this over.  I will go quietly.... maybe.

Derek told Dr. West I was freaking out over something.  I joked with him later why he said that when I was just talking about it.  He said he was just kidding.  When I asked him what I was going to do with him, he mumbled, "you've got a year to figure it out."  He is starting to feel bad about Krystina and me being here and dropping everything at home.  He talked to Dr. West about it today, and Dr. West said it could be a year or more before he is through rehab.  I am not staying a year, and I tried to tell him that.  I told him I was only staying until his serious surgeries were over and he could manage better on his own.  Krystina will be with him after that.

But I couldn't leave him like one of the soldiers down the hall.  Someone from Derek's Platoon was in his room alone today.  He had had surgery this morning, and this afternoon,he was sitting there by himself.  He had come to visit Derek a couple of days ago, so I went in and sat with him for a while.  He is a nice kid.  I can't stand to see anyone go through this alone.

The disconnect of the flow of information between the patient and staff on the ward is still my biggest problem.  One example is I said yesterday I wanted to be there for Derek before he went to surgery and would be back by 06:30.  Well, while on the floor, first case leaves for PACU by 05:30.  If he hadn't been late, I would have missed him.  In ICU, they do not go to PACU either before or after.  No one told me of this change.

I am used to the easy flow of information from being in the ICU.  I have a team of doctors making decisions about Derek, and we have yet to meet them.  I know two of them, Dr. Bograd (resident) and Dr. Gooddlet (intern), both of whom were in the ICU, and Dr. Gooddlet was around today and Dr. Bograd yesterday, but I have not met the staff doctor, Dr. Carpenter, or the chief resident, Dr. Moore.  I hope to change that tomorrow.  I don't want doctors making decisions about Derek without meeting Derek and having a discussion with me.

They had intended on starting Derek back on the methodone today.  Had I not been in the PACU with him, that would have been done.  I understand that this is a big file; however, it was only one week ago when methodone and/or klonodine and/or a combination of the other meds sent him into the stratesphere.  It is WAY to soon to think about that, and no way am I going to allow that.  I do not like the way they just start him on meds without a conversation with me.  THAT will change with my conversation tomorrow.
I mentioned the Tylenol and my concern yesterday. I discussed it with Dr. Gooddlet today, and with Dr. Fiske, the infectious disease doctor.  Dr. Fiske is very against him getting Tylenol and did not even know about it.  She said it is very important not to mask the fevers since they are such an important diagnostic took.  Polytrauma patients are very tricky since there are so many teams balancing different injuries and concerns.

I was curled up on the chair in Derek's room today reading when a woman in a navy uniform popped her head in and said, "are you the nurse?"  Really?  If I was the nurse would I be curled up on the chair reading?
We had a dippiest RT today.  She asked Krystina to lift Derek so she could readjust the vest for his therapy. ???  Kystina is 5 feet tall and 100 lbs soaking wet.  She could barely lift Derek's arm (sorry, honey).  And this woman actually expected her to lift his entire torso without help?  Are you kidding?
Tonight's RT was the peppy one from the ICU who used to come in in the middle of the night using her outside voice.  She was SO excited to see Derek on the floor, talking and eating.  BIG improvement from the last time she saw him.

So, many more improvements today then set backs.  Those are good days.  We'll take them. 

Good night, and God bless.

A Man and His Remote

 

Today was the first full day on the ward.  It's.... different.  I cannot say I don't like it.  It's just different.  I feel isolated from the rest of the world. 

In SICU, the door was glass and always open.  On the ward, due to droplet precaution, the wooden door must be kept closed.  In ICU, I always saw who was coming and going.  This did not provide privacy, unless the curtain was closed, but I felt like I was part of the world.  Now we are in our own little world with very little interaction with anyone else unless we leave Derek, which I do not want to do just to socialize.

Growing pains.

The nursing staff is very nice, but I miss Peter and Trista and Suzanne and so many of the others I came to know.  And I miss Dr. Dan.

Overnight Derek was sick to his stomach so the overnight doctor put in an order that he could take nothing by mouth until after surgery tomorrow.  I came in this morning to one very unhappy soldier.  He was cursing to beat the band.  I asked the nurse to call Dr. Perdue, whom I had just missed.  He was in Church but said I could call him.  I was not going to call a man in Church.

Dr. Bograd, a member of Derek's surgical team, walked in within minutes.  I discussed the problem with him, and he said he would take care of it, and at least get him back on liquids.  Within ten minutes the nurse came in and Derek was back on a full diet, but the g-tube was left open, which means his stomach was being drained.  It satisfied him.

Derek later told us that he was just nauseous and tried to tell the corpsman, but without the speaking valve in (he cannot sleep with it in), the corpsman thought he wanted to be suctioned, and it was the suctioning that made him throw up.  We discussed it tonight that the corpsman will be more careful and make sure what Derek wants before he tries to suction him.

His white count is back up a little to 17.  Will it ever just go back to normal?  So done with battling infections.  And they decided to start a tylenol drip to help with pain, so that will impact on fevers.  If he were to spike a fever, I am concerned that the tylenol will mask it.

I was advised today that he is the most critical patient on the ward.  Great.  He went from being the sickest patient in the hospital to the most critical patient on the ward.  Well, you know what we say to that?  Bring it!  Never give in... never give up!  Climb to glory, soldier!  To the top!  All the way!  The tougher the battle, the sweeter the victory!  God has a special plan for this kid or he never would have survived all that he has.  He will get through this.  He has two hard headed, stubborn women at his side who love him to bits and who will kick his ass if he tried to give up.

Derek and I did his OT together.

On the RT front today, the little miss who showed up yesterday and told me that there was a different team on the ward than in the ICU was obviously fibbing, but I knew that because I know Angela has patients on both.  The gentleman we had today was the same one we had yesterday morning in ICU.  When he came at 17:00 today, it was right after the dinner tray.  He said he would do his other patients and return when Derek had finished his dinner.  Just what she should have done last night instead of giving me attitude.
The best stories from yesterday that I forgot to mention, since I was so tired when I got to the room last night, had to do with the transfer to the ward.

It was a comedy getting Derek transferred.  Peter is a goofball.  He was running down the hall pushing Derek's bed with two corpsman.  He cracked jokes with Derek to keep his mind off the fact that they had to unplug his bed.  Derek has this awesome bed with sand that is blown to keep the patient from getting bedsores.  Since Derek had blast wounds that were made worse by his seeping wounds, they got him this special bed.  He loves it.  But when it is unplugged, it is hard as a rock.  Think about lying on the beach with an open sore on your back.  So they ran.

When they got to the elevators, Krystina and I couldn't fit with the wheelchair.  Peter leaned out and laughed at us in a sing song voice, "You have to wait!"

In the room, they were trying to get the TV to work.  They couldn't find a remote for the TV.  The nurse call button is supposed to work for the TV, too, but it wasn't.  They said they would call someone to work on it.  With that, Derek pulled out the remote from under his arm.  They asked him where he got it, and he said he took it from ICU and shrugged his shoulders.  It worked!  Go, Derek.  They let him keep it and said they have extras downstairs.  Don't try to take a man's remote!

We are getting used to the ward, and I am sure we will become comfortable.  I know four other families well, and once Derek gets off droplet and contact precautions and we can stop gowning up, or at least stop wearing the masks, it will be more comfortable.  When he is off contact, the doggies can visit!

Seventeen were medivac'd in tonight of the 70 that were injured on 9/11 in Afoolistan.  My heart and prayers are with them all

Graduation

 

After 50 days in ICU and almost losing my brave, wonderful boy, at 15:00, we finally escorted Derek down the hall, into the elevators and up to the 4th floor of Building 10 (SICU is 3rd floor of Building 9A).  The 4th floor is the first step towards becoming an outpatient and rehabilitation.

One of our favorite nurses, Peter and two corpsman pushed the heavy bed, Krystina carried our two, overladen pocketbooks, and I pushed the heavy as sin mechanical wheelchair packed with Derek's things from Room 318 in ICU to our new home on 4-central. 

It was a bittersweet moment.  A few tears were shed....mostly mine.  I was thrilled for Derek that he was well enough to take this next step, but I am nervous as sin that he is not ready.  I trust the doctors that they would not have sent him on his way if he was not ready, but what if?  We will also miss all of the wonderful nurses we have come to know so well.

They sent him along with a corpman who will be in the room with him 24/7 until he is more independent.  At this point, he cannot even manage his own food tray.  With only one working hand, his non-dominant hand, and the inability to sit up straight and freely move himself due to the x-fixes in his pelvis, he still needs help. 

The good news is that there is no fungus or other infections growing in the arm at the present time.  They have them under control.  Therefore, either next Friday or the following Monday, Derek can finally receive the flap on his arm.  At that time, we will be back in SICU for a few days, but then the x-fixes will be off of his arm and he will have a little more mobility.  He will not have use of that hand; however, until they perform extensive surgery on it.  To keep his fingers nimble and from clawing up, we have to move them almost every hour.

Infectious disease is also talking about setting end dates for some of Derek's antibiotics.  The end is finally in sight.  He is closer to the edge of the woods then ever before.

Derek came so close to leaving us.  God must have a wonderful plan for him.  He is a strong, wonderful boy who has overcome so much in his life.  NO ONE can tell this boy what to feel, think, believe, etc.  The doctors have been amazed at his ability to express himself, even while under the control of strong medications.  He may not remember dates and whether he was nauseous yesterday, but he knows what he wants and how to get it.  When asked about his medical condition, he tells the nurse to check with me, because I know better.  On all other matters, he is in control.  He has been for weeks.

The only problems today were our final bit of drama on the third floor.  This doesn't only fit that situation, but life in general --- I do not understand why some people feel the need to insert themselves into other people's business.  Unless you know the entire story, and unless you walk even half a block in the other person's shoes, don't comment and don't defend the other side.  You just don't know.  You don't know the history.  You don't know the whole story.  So please just keep out of it, especially if it is a situation like this one where we are already dealing with so much.

This matter involved a family member bad mouthing other families on the unit for bits of converastions that she overhead as if she knew the whole story.

The other problem was with RT - respiratory therapy.   The RT showed up to do Derek's RT just when he was eating, each time.  At breakfast, he was asked to return a half hour later.  He didn't return.  At lunch, I had not yet started to feed him, so we waited until after therapy.  But at dinner (17:00), I had just started to feed him when she walked in.  I made a comment that it was ridiculous that it was scheduled for the same time as the meals were scheduled.  She started bitching at me that it wasn't her fault, that this was NOT ICU, and that I couldn't set my own schedule.  Excuse me?  I told her I wasn't trying to set my own schedule, I was simply expressing the opinion that it was tough to have the RT scheduled at the same time as the food trays because he needed the RT, but he also needed to eat, and I couldn't let the food go cold.  Also, inasmuch as he had already started to eat, if she did it within the next half hour, he would vomit.  She took a real attitude with me then, and I told her to back down the attitude, and how did she respond?  She had the nerve to tell me to back down MY attitude!

Oh. hell. no.  You DO NOT yell at a family member.  I told her to leave the room, and she said no.  The corpsman (Darin) stood up and asked her to leave.  She said she would be back "when SHE IS GONE!!"  I told her that would never happen because I rarely leave his bedside, and it would be a cold day in hell when she was allowed back in my son's room.

Darin immediately apologized to me for her behavior while Krystina and I burst out laughing.  The nurse, and later the charge nurse, both came in an apologized.  They promised me that someone else would be in to take care of the RT as soon as they were sure the food had settled.

She became defensive over my not liking the schedule that was not her fault.  Am I not allowed to disapprove of the shedule?  I am an attorney.  I have clients on the phone, in court, and in my office screaming at me for things that judges do or for their ex-husbands or wives not complying with court orders and me not getting them too!  I have to understand that they are stressed with the situation in which they find themselves, and that it is not ME they are yelling at, but they are just frustrated.  If I got defensive and yelled back, I would lose all of my clients.

In this situation, I wasn't even saying anything to her.  I was saying to Krystina that the scheduling of it stunk.  No accounting for attitude.

Remember our noisy neighbors from last night?  At 21:30, I knocked on the door and asked them to be quiet.  They refused to open the door but told me they could hear us talking, too.  That was impossible because at 20:30, Krystina was under the covers trying to fall asleep, and we said nothing more to each other until I came back from their room.  They didn't settle down for a while.  At 5-something this morning, the loud laughing and talking started again.  I sat up, banged on the wall and screamed "shut the F up!"  Yes, I was aggravated.  I am sorry for the foul language, but I was done.  Rude and inconsiderate.  I called the office (there is no front desk) and complained.  Don't know if anyone was in to talk to them today, but tonight they seem quiet.

So far the nurses on 4 seem nice.  We will get to know them.  I have just become attached to the SICU team.  Suzanne is pictured above with Derek.  She was Derek's nurse his first night in the SICU (CCU then).  She came to say "good-bye" before Peter wheeled us out.

We will miss so many of the wonderful nursing staff -- Peter, too, and all of his teasing.  This morning, he was showing a new corpsman the ropes and I walked in, sans mask.  He started singing, "One of these kids is not the like the other.  One of these kids is doing his own thing!"  Took me a minute to pick up on it.  He was picking on me for not wearing my mask.

Derek is still on droplet precaution.  If we have a cold or something, we could transfer it to him, but mostly, it is to protect us.  I've had doctors walk in and tell me they will take the chance.  I was waiting for Suzanne to bring me one of the tying masks.  I can breathe better with them!

And Derek is still on contact protection.  Same reasoning, but we have to keep him free from infection from our clothing, and from us taking anything he might have outside the room on our clothing, so we wear these horrid, yellow gowns.

I will be very happy when those precautions are lifted.

Until then, we are thankful for all of the blessings that we have.  Derek has come a long way.

P.S.  I wish I could respond individually to the comments in the Guestbook.  I do try to read them all.  There just isn't enough time.

But @ Julie Terry - Aaron was in the room next to ours in SICU.  Being from Ft. Drum, I felt a pull towards Kat and made sure I greeted her the night she arrived.  Sweet lady.