Over a year

How long does on soul have to suffer? I am not sure if I mean him, or if I mean me. The pain is real. I writhe in my own self-loathing and self-pity. How narcissistic of me.

How can I miss him so much? He did this to himself. Yet, I am the one paying the ultimate price for his stupidity and triviality. I wish I had just one day. I would give my soul for a single day with Mike cognitive and aware.... just to hear him say, "I love you" just one more time.... just one more. To feel him caress my hand; to feel his eyes look at me lovingly.

Instead, I get those empty, hollow eyes. My punishment or his... maybe both? Who knows, who cares.

No family. Nothing. I am left alone in a world that seems so very large right now. I have no one, and this is something that will never change. I push them away. Because they will all end up like him.... dead.

Happy Birthday

Today is Mike's birthday. I bought him a teddy bear, a baby toothbrush, a tube of "training" toothpaste, and oodles of flavored chap sticks. Mm, mm, good...?

May seem a strange way to spend a birthday, but he gave me an enormous gift today himself...

First, as soon as I came into the room he started vocalizing and doing so loudly. He was so tickled to see me and to receive that little bear. He would follow it with his eyes and even look for it. He looked at me numerous times and smiled while vocalizing. Very active and aware...

The present he gave me? Well, I asked him for a kiss and he made a smacking noise. Well, I waited about 10 minutes, got really close to him, and asked him for a kiss.. he tried lifting his head and gave me a kiss. Amazing!

Happy birthday baby... happy birthday.

Taking His Time

When this started, I had always thought coming out of a coma happened in about an hour thanks to television. What I am discovering is that the process takes time... a lot of time in some cases.

Mike has been slowly making improvements. Today, Mike actually stuck his tongue out when asked. Granted, it took him about 45 seconds to respond, but he did respond and more than once. What does this mean? We will see if he can repeat this tomorrow or the next day. It is all about consistency.

When Mike grasps with his left hand, he has never held it before. Generally, it is squeeze, release, repeat... Today, I was holding his hand and he was looking at me. When I told him it was time for me to go, he grasped my hand and would not let go. He had a pleading in his eyes.

I stayed with him until he finally started snoring...

"We are sorry, but your husband is in a vegetative state."

That is not something you ever want to hear. Questioning life in general has often led me to question whether Mike really would want to live like this. But that is not a call I feel comfortable with making at this time. I have pondered what will happen if he wakes up enough to say he wants to die. How will I take that? It is not my choice.... right?

Through these last few months, I have experienced many emotions. Emotions I did not know I possessed. Stuck in this gray area that is not quite the here and now, but not able to look back or look forward. Some days all I can do is cry, but I try to hide this from those I encounter.

What I do know is that I am educating myself on topics I never imagined would enter my life. The brain is a wondrous unexplored region of our world. What "professionals" say will happen... doesn't. The brain is voodoo.

I ask myself "what if" a lot...

What if Mike had died that fateful night 7 weeks ago? What if I was rich and capable f providing him with the neurorehab I so desperately want for him? What if he dies? What if he lives?

What I do know is that each of us lives day-by-day never truly knowing whether we will be alive tomorrow. Each of us takes life for granted in some fashion. But I know that this experience has kept me locked in today. Each day is a gift; each gift is a dream. Where will life take us tomorrow? Honestly, the only one who knows that is God, and he isn't telling.

Hard Day

Today was an extremely hard day for a couple of reasons. The MD playing neurologist came in today, and they informed me that until Mike can come in and follow commands, they are not working on the front teeth they broke while resuscitating him. They now stick out from his gums and cut his tongue mind you... Finally, the bedsore looked worse and the ensuing conversation with the doctor irritated me and left me with a sour taste.

Standing up to people has never been my forte. I am the timid one afraid to leave the house. Spending time outside put me in contact with people... and people scare me or simple make me feel sad for the human experience... This is new to me.

The MD said that while Mike has regained his reflexes, he is still in a vegetative state and what I see there now lying in the bed is all that Mike will ever be. Mind you, they said the same thing last week. The difference is astronomical. He is moving his head, has triple flexion action going on, and much more. He looks away from his reflection in the mirror which saddens me on many levels.

Am I doing the right thing? Am I fighting a good fight? This is the man I love with my very being, and I feel empty without him, but I have to ponder whether I am in love with an idea of what was rather than what will be. Do not get me wrong, I love Mike dearly, but I am scared of what all the tomorrows hold in store for not just me but him as well.

His main doctor came in today and informed me that they were doing all they could do for his bedsore. But the problem is that all they do is wash it with soap and water and put zinc ointment around the edges. I know they can do more. The doctor said they were following the suggestions. My question was, "So as long as you follow the suggestions of one wound care specialist then it does not matter if it gets better or not?" She did not have an answer.

This is frustrating for me, but I know this has to be even more frustrating for him. I still feel him on many levels.... but I do not FULLY feel him as I once did. This change happened the morning of the cardiac arrest. How do I explain that?

How can I explain the cups? I was making a sandwich on the kitchen island area and facing a row of hanging cups under a cabinet about 7 feet away. All of the left cups started moving in unison. I found this strange, but what was even stranger was that regardless of how I tried to shake that cupboard I could not get those cups to move at all.

I have hope and faith... it is all that I can have. I also spend a lot of time educating myself on recovery methods, therapies, and his condition. Education is the key to my sanity.

Yes, my family tells me how proud they are, but they do not see how strong I try to be on the outside while shaking like a leaf on the inside. Stuck in a continuum of remembering his love, his laughter, his tears, and fighting a system that seems to care less whether he lives or dies.

Love always,
Steph

Changes Everyday

Let's see... today was not as active as yesterday, but Mike did do a few new things.

One, every time I showed him a mirror, he would take about 15-seconds to actually focus, then he would turn his head away. Now, this is odd. I understand the mirror test, but this has a different set of results than what I have read about. Is this a reflex? This does not seem like a reflex. To me, this appears to be a man that recognizes himself, but does not like what he sees.

I tried this on about 8 different occasions throughout the day with the same results. The last time, he did not look away, but he did start crying... what does it mean?

He did not repeat the squeezing of my hand. In fact, he seemed rather weak today. Albeit his legs and arms did move from time to time. The big thing for me was having the head nurse actually see Mike move his head towards my voice. He actually startled her.

We spoke today of weaning Mike off the trach. He ias currently at 26% oxygen, but his lungs are clear. He is swallowing, coughing, and yawning on his own. My thoughts are that it would reduce the chance of respiratory infection if he is breathing through his nose and mouth - our body's natural filitration system.

All in all, today was a good day. It is hard for me to sometimes take an objective look at his changes from day to day. What I do not know is more and more everyday; what I do know is I love the man in that bed, and he is slowly improving. What more could I ask?

Interesting Improvements

Hmm, they moved Mike to a lower unit today. I found out the doctor has been lying to me, and that is wrong. I have been told that they have NOT, in fact, been recording his responses as indicated by the doctor and nursing staff in the step down unit.

Anyway...

Mike moved his head today! This is a first... his head never moves. Today, he was resting comfortably - I hope - on his left side. He moved his head from the left side to center and back again in about 3 seconds. After he did this he let out a sigh.

I have been putting a variety of chapstick flavors on his lips. Today, he was licking at his lips... yes, he truly loves his cherry chapstick. The nursing staff witnessed this as well. When the flavor was gone he stopped until I added the chapstick again.

What do all of these improvements mean? Honestly, I am not sure but I do know I have to find a way to get him out of there ASAP.

THIS IS VERY GRAPHIC...

When I went in he smelled of urine. A man with a catheter should not smell of urine. Well, seems his condom catheter was on the floor and he had urinated all over the bed. When I was helping change him I noticed crusty poop on his bum...

How can a VA hospital or any other hospital even justify dried shit and a catheter on the floor? This is deporable and I have no idea how to make a change. I bath him from head to toe... but I have yet to figure out how to wash his hair which is alway oily, dirty, and messy.

Any ideas? Thanks!

Still Hanging On

I haven't written in a while. I didn't have the heart or energies to write during the holidays...

Today is our anniversary. Time to remember how we met, think of our future. I am not a psychic, but I have faith. Faith that Mike will continue to improve. He is as stubborn and obstinate as I am. If any one person can pull through this, it is Mike.

Mike is my love. I love you Mikie!

His condition has a life of its own. His higher brain functioning is minimal, but he is making small improvements everyday. He started responding to pain, and he is not posturing which is another good sign. He is showing awareness, but he still does not follow simple commands.

Another day where I thank God for his improvements regardless of how small they may seem to me.