In Again.....

The home health nurse called me Friday afternoon and said Marty had a lot of bacteria in her urine so we started her on our tried and true antibiotic.  They called Monday afternoon and said, nope, that particular antibiotic won’t kill the bug, I said the nicest thing I could say, “Well crap.”  I have better words, more powerful words at my disposal but I showed restraint. 

On Tuesday we checked into Providence Hospital where we have a room with a view.  Hey, don’t hate, a room with a view in the hospital is primo stuff.

The plan is to attack this Pseudomonas aeruginosa bacterium with Nebcin, a powerful antibiotic,  because Nebcin is the best IV antibiotic to smoke this bug.  We did this same thing in June of this year but used a different antibiotic.

Marty, as one would imagine, is not completely on board with this event.  She says, “I don’t feel bad, why am I here?”  I say, “Because we love you and hate pseudomonas aeruginosa.”

The truth is I was surprised at both of these diagnoses.  Marty seemed to feel fine and was not showing her usual symptoms of an infection.  She was showing some signs of a fatigue but all other signs pointed to….well nothing, that’s why we like having the home health nurse come by regularly to retrieve some urine.

By all accounts there were a lot of the evil bacteria in the pee and the lack of sensitivity of it to oral antibiotics Marty can take is a hugely complicating factor.  Thank God for a variety of bacteria killers.

Marty is hanging in there occasionally pouting, sleeping, watching TV and dealing with the comings and goings of various medical providers at all hours of the day and night.  She has been on a “I’m not getting out of bed” mode until I finally said yes you are and guess what, she kind of liked getting up and letting her back and bed get a little air.

We wheeled around the floor two or three times, looked out the window and found one spot where she could sit in the sun for just a few minutes.  We went back in the room and Marty stayed in her chair, talked with daughter Erin on the phone and watched Ellen, she loves Ellen.

With luck the urine sample they took today will be clean and clear and Great and Wise will spring us from hospital captivity on Saturday.  Can you imagine how good a real shower will feel after five days in the hospital?

We still plan on Thanksgiving at the lake with our whole family.  Pure pee should have arrived by then and we won’t have to worry about that particular ailment for awhile, I like not worrying about someone else’s pee.

Marty continues to do what she does which is live, accept, make new friends and have an impact on an ever expanding universe of people.  I know I’m not particularly objective but I believe the people she contacts, the lives she touches are always enriched.  We just get to do that with different people when she’s in the hospital.

Here’s to getting the hell out of here soon.

A Legend

In the middle of a long day in Washington DC I watched as my father walked up the sidewalk, walking past the carefully formed life-sized statues of men in combat gear, I watched him march at the memorial to men of war, men who fought years ago for people they did not know.

I watched as he marched flanked by flags carried by old men in light blue jackets and followed by a group of South Korean college students, solemnly walking behind paying homage to strangers who had given lives for their very own freedom.

Veteran’s Day in D.C. is amazing.  The President of our country standing at the tomb of an unknown, old and young men and women walking with old medals on new jackets carrying old flags and wreaths marching proudly and solemnly grounds you, it helps you focus on how perilous our journey can be.

My parents and I spent the day at Arlington Cemetery, at the Tomb of the Unknown Soldier, at the Women in Military Service Memorial and finally at the Korean War Memorial.  I saw countless men and women in uniform, I saw countless veterans from all branches of service of all ages, I saw them remembered and thanked as they remembered the great service they had given a free nation.

I watched as young South Koreans came up to my father and ask if they could shake his hand, if they could give him a hug.  These young men and women came to the USA to learn and they spent part of their day listening, intently listening, as old men described a war where so many died yet so few remember.

I listened as Tim one of the flag bearers talked of Busan and a cemetery where 10,000 American soldiers were buried and only recently have had their remains returned to their homes.  I listened to the moaning sounds of Taps played to mark too many deaths,  I listened to my own father talk of this largely forgotten war, I listened as a South Korean general talk of his grateful country, I watched as strangers from England and South Korea and the US listened to these men commemorate their personal histories.

Mostly I sat in a certain amount of awe and tremendous gratitude as people, perfect strangers, came up to my father, a man I never knew as a soldier but was my hero anyway, looked him in the eyes and said thank you.

At the airport as we sat and waited for our airplane home a large muscular young man sat across from us.  I watched him as he stared at my father, he was a big dude with tattoos covering his right arm and with tattoos of large bullets tattoos on his calves, he kept staring and I kept thinking, what is up with this guy.  

When his plane was called the guy got up, walked up to my father, extended his hand and said he just wanted to say thanks.  He said he was a marine and his guys, his compatriots all thought that those old guys who served, who fought, who risked their lives, they all looked on those old guys as legends.

It’s amazing….I’m 61 and I finally know, I'm the son of a legend, Marty would be proud.

Paranoia is Really Hard

There is a fine line between paranoia and gut instinct.  It’s the difference between the “feeling” you develop when you intimately know your partner and obsessive worry about every twitch.  At times, I’m not sure I know the difference.

I know Marty, I know almost every nuanced movement, I know the yawn, the stretch, the moan and the slump.  I watch and sometimes I assume and I almost always wonder, “Is this a sign”. 

When you do this for a time, when you are another person’s life line, when you know someone so well, when you have seen illness come hard and heavy you get paranoid about all of those twitches.  That means when Marty yawns my heart rate speeds up and the adrenalin starts to pump just a little harder.  Is it a yawn or is it a precursor to something worse? 

There’s the line, there’s the decision point, which is what makes this really hard for someone who embraces and feels anxiety like it’s your skin, for someone who struggles to keep the demons of worst case at bay.

I confess, I don’t really know how to differentiate between what is a real symptom and what is simply hyper-vigilance.  Experience helps with perspective but experience also means I have seen what can happen with Marty and how fast, how amazingly fast she can go from fine to on the edge of extremely not fine. 

It is the thought, the fear of the consequences of inaction that haunts me every day.  It is the thought of the very real awful results of inaction that deepens anxiety and causes me to doubt.

Early on in our journey I worried about being one of “those” caregivers, one of “those” almost hypochondriac types of patient/caregivers that jumped the gun at every cough, sneeze, burp or fart.  I did not want to be that guy, I didn’t want to be the old man that health providers avoided because we were always there with every little thing.

My doctor told me to forget about that and not worry about what others might think.  He said I knew her the best and I should follow and advocate for my “gut” for my “feeling” because I was the one who knew her best.

He was right and Great and Wise has been the supreme advocate for following my instinct.  He never fails, when he makes a diagnosis or recommends a course of action, to ask, “What do you think?” or “How do you feel about that?”  The doctors listen to my gut.

I remember one trip to the ER when Marty had been showing very early signs of sepsis due to an undetected UTI.  The doctor did the all of the appropriate diagnostic tests and came back and said, “You do know your wife.”  Duh.

My knowing my wife is not the problem.  My learning to be a strong advocate for Marty is not the issue.  My evolution to a proactive as opposed to a reactive caregiver is not in question.  As a caregiver you have to be all of those things. 

The issue is how do you know the line, how do you distinguish between paranoia and the real coming storms that will certainly come back to visit us.

Truth….I don’t have a clue, if I did I would have my anxiety levels in check more than I do.  If I had a clue I wouldn’t catch my breath at a yawn or a stretch or a cough or a sneeze.  If I knew how to tell the difference between real illness and my worry about a real illness I would ….. well I would be a lot smarter than I am because most of the time I worry way too much.

When someone I know experiences a bad medical issue or trauma, I, as someone who is filled with Gandalf like wisdom and insight offer advice, of course I do.  My best advice is one day, one issue at a time and don’t borrow trouble.  

At some point in time I might listen to myself.  Naw….that would make way too much sense.

Nurses Rock

I may not be an expert but I’m close.  Over the past years I have become something of an expert on nurses and more importantly I have come to understand that you better be nice to your nurse because they can make your life better…..or not.  

Prior to Marty’s strokes I had limited contact with anyone in the health profession.  I tried really hard to stay out of doctor’s offices, hospitals or any other place that had sick people.  I didn’t like it, I didn’t have the patience for it and it felt icky…. sick people you know.

Over the past ten years I have come to know and love many in the health care business and a lot of those people are nurses.  I have to say, if you plan on getting sick or need health care, nurses rock, they are the ones who actually deliver a good part of that health care the good doctors are prescribing.

The nurse is the one who will wipe the drool off your lips and clean your butt when needed, hopefully with a different cloth.  The nurse is the one that jabs the needle in your back-side to deliver the good stuff, they are the ones that make sure your heart is still beating and how fast, they are the ones who get the blood and the pee and the spit, the ones that bring you the warm blanket and the ones that are the gate keepers so you can get some of that high quality care.

We have been fortunate, first that we can afford health care and second because we have had mostly positive nurse experiences.  Maybe it’s not luck, maybe most nurses sincerely want to provide good care.  Maybe most nurses do what they do because they care; maybe most nurses do God’s work because they are good at it and feel like they have been called to do what they do.  

I don’t know, I just know nurses make lives better at the very worst possible moments in life.  Being sick, hurt, or broken is awful, bad care makes those moments excruciating, good care make them tolerable.  

Toni, Wendy, Sarah, April, Melissa, Jessica, Tracy, Annette, Patty, and more, these people have become a part of our tumultuous life and they are a part of our posse, our crew, our team that loves Marty, cares for Marty, and works for Marty.  All of these people, Steve, Stacy, Kathy, Denise and others have done what many could not, made our lives better during really anxious times.

The nurses I know work hard, they work really strange hours and they work long shifts. 

The nurses I know don’t get to pick their patients, they take care of the sweet and generous and the ass hats because we all get sick from time to time.  

The nurses I know carry bags of fluids, wash their hands until they are raw, listen to coughing and smell poop, pee and puke until the smells stay with them all day.  

The nurses I know apologize when they hurt you, feel bad when they can’t get blood on the first stick and put up with my occasional anxiety ridden insanity as I try and take care of Marty.  They know and allow me the occasional mental health visit to Great and Wise or the hospital and not one time have they ever given the hint that it’s not all right.

The nurses I know, when they know Marty, deeply care for her.  The nurses I know, when they get to know Marty, care for her and marvel at her resiliency in spite of the fact that they see this kind of resiliency multiple times during any given day.

The nurses I know are my heroes as they go about their work and still go home to care for their own families.

I love me some nurses and if you don’t now, someday you will because it will be your ass that’s getting the needle.

P.S.........I gotta add one other thing.  I also love the first faces you see and the person you take to when you call in a frenzy.  Angie, Pay, Annetta.....they don't get to do the sexy poking and probing but they are the gatekeepers, the people who get us in when Marty'sHusband is in a panic.  It takes a village.