But you said I could keep him ...

I began this Blog a while ago. It began with the rare "Blood Disorder" diagnosis given to my youngest son. It has been a two-in-half year struggle to save him. While concentrating on him and his desire to live and our desire to save him, many things have fallen in my path. New doors opened and old doors closed. All the while reading, listening to the doctors and studying this disease and trying to understand while we live in the twenty-first century; and see no clue how to eradicate this infliction. As I mentioned before there have only been 10 cases ever reported anywhere and he is now the eleventh. How did he get it, no one knows not even our marvelous physicians. He has been treated in three (3) cities and we were met with the same response, no one has ever seen it...I am weary of the time spent under stress and the desire for a healing for my beautiful son. As I write he sleeps in his bed of his hospital room. The night is so quiet except for the rattling of the Med carts being pushed down the hall stopping at each room for nightly med doses. I lean back in my recliner next to him and close my eyes hoping sleep will find me. I can't remember the last time I got eight hours sleep, oh that would be heaven just calm happy dreams of better days. The smells of medication and the cold temperature from the air conditioner is brutal for my tired frame. As I drift off I can smell the sea air and think of my love lost  .. I wonder what happened? Yes, we are together and at the beach. The kids are all frolicking in the sand and surfing. Freckles our Cocker Spaniel is running up an down the beach barking as his curly blondes ears flap in the breeze..haha.. too cute. Oh I feel so happy and loved, all I see are smiles and hear giggles as they run past kicking the sand everywhere..How I wished I hadn't got upset and yelled to stop. For in time it would all end .. Oh God please let me sleep take me to a place where my heart sings and is free. Let me bring my family as it was; my two sons and my loves two children..those are the days I long for so please I pray give me a respite for the night and I will be forever grateful .. So grateful Father ..so grateful ...sigh

October 2011

As I drove to work, the day was cool and overcast. The clouds broke open every now and then to allow the sun to peek through. It feels like Fall alright where; did the year go? I have agreed to assist a Doctors wife in her investment of a Billing Service. Being a struggle writer, well extra money is always welcome. By the time I make my way east toward the foothills of San Diego a cool breeze has arrived, but I do not care for Fall is here, one of my favorite seasons. I busied myself at my desk when all of a sudden my cell phone rings it is my son Damien and he is breathless. I could feel my gut tighten as he spoke, "Mom something is really wrong, I am having trouble catching my breath and my left shoulder hurts really bad. Please come home and help me." I thought for a second and realized if he is that bad he needs immediate assistance! I told him to call 911 for the return trip home for me was 40-45 minutes. I would head that way to the hospital. Well, when Paramedics and the Fire Department arrived he had a 105 temperature and was going into Septic shock. He had thought he had the flu and myself I thought he might have Bronchitis for low grade fever and congestion. I arrive home and they are gone he had been transported to the hospital already his room is messed up and some plastics were left behind by the emergency crew. The house had an eeriness about it, a stillness it made my skin crawl. You know a foreboding feeling right before receiving bad news. I quickly changed fed the animals a dog and cat and jumped in my car for the ride to Sharp Grossmont Hospital. I had to keep reminding myself to slow down for that corridor of the freeway was tightly monitored by The Highway Patrol. The drive seem to take forever ...

Daybreak ..

I am startled out of my sleep. I am spending the nights in the normal lounge chair, you know like a "Lazy Boy?" No offense to the company but I have always disliked these chairs. I swore I would never allow one in my house and here I am sleeping in possibly the favorite choice of all men, truckers, golfers, bikers; and I am guessing the "Duck Dynasty" guys! Well never say never .. Damien has made his way to the bathroom he is vomiting once again. This horrible infection changes in an instant, from calm to extreme sweating and chills. He has went from being chilly to full blown Sepsis in a matter of hours. Driving to the hospital as quick as we can and having to stop all along the way so he can throw up. He is sweating profusely and by the time we arrive at the hospital in 15-20 minutes he has a 105 temperature and is rushed in immediately for Sepic care in the ER. The only positive aspect to this horrible infection is the hospital here has gotten to know him based on their treatment of this "rare" infection.
Yes I said rare, we now know that he has contacted an extremely rare blood infection. Only ten (10) documented cases "ever" .. so the doctors have said they do not know how to treat it, for no one has ever seen it here during their years of Medical Schooling nor practice. I respect them for their honesty, however my fear is high. My son is so frail and pale in paler you can see his veins beneath his skin. My gosh he is just a young man how do such things happen? There is no knowledge of where or how he got it and now I know no one here has the experience to treat it. The doctors say these things are here with us always, but not all contact them. The only sure thing we know is that Damien's Auto-Immune was compromised at the time the infection invaded his system. He had been anemic for a while but as most grown young men he preferred to treat it on his own, like doing nothing. I have learned with two (2) boys it does no good to try an thrust your opinions and advices on them, for they will inadvertently do the opposite. 
I quietly moved toward the bathroom door. I did not want to interfere as an over anxious Mom, like he couldn't see that! I asked if I could help and he said "no mom" so I went and sat back down. I so wanted to go in and cradle him in my arms and wipe his brow. Letting go of a grown child is so hard for in your eyes they are never truly grown in our hearts. Taking the backseat when needed was the hardest thing I ever did. I finally knew there was nothing I could do until asked .. Oh Lord give me strength to do this. I guess I should back up a bit to the beginning of this nightmare.
 

Why do they keep hospitals so cold? I mean a person is already sick when they are admitted and yet, you run a chance of acquiring Pneumonia once here. The dark of his room is quiet and soothing to me. But as I watch him sleeping it becomes an Iron Lung  watching his chest heave up and down. But as a Mother I have to make sure he continues to breath. These last months have been treacherous; each day we never know what lies in tomorrow.  This infection that has raided and ravaged my sons body it is a sly yet quiet enemy. Sneaking into his body unknowing to us why or where it came from. He was a young and handsome man with a life. Over the last year and a half it has reduced his body to a fragile old 29 year old man. He is gaunt and fifty pounds less, the pallor of his skin is pale almost ashen in color. Each day I arrive and immediately look for movement, just to make sure he is still alive. I go home to shower and refresh myself so I can feel human once again if only for a few moments. I stand under the shower and let the warm water run over my face and just for a brief space of time; everything is alright .. Until I pick up my keys and head back to the door then reality returns .. my son is dying.

Waiting for a miracle ..

When I began this Blog it was to promote a book I wrote two (2) years ago. But life kept getting in the way, I tried very hard to understand why? Well, my youngest contacted an extremely rare blood infection, there have been on 10 reported cases according to UCLA. So I got my answer, I was needed as a Mother even though he had grown and left home. During this struggle his wife and partner of ten (10) years she left him and took their eleven (11) year old son. He has almost died 4 times now and has learned to live in the hospital for all this time. So now the focus of my Blog has changed from my book to my son's survival, nothing else matters at this time. I hope you will follow us as we journey down this path. I will begin the Blog from now and I hope you find it interesting and give more education for on this infection. It is out there in our air, however they are saying now that the other nine (9) patients had received tattoos. It still astonishes me that there is such things in our air we breath. So may I wish you all a marvelous day and I look forward to hearing from all of as we travel along.

A Aha Moment

All of a sudden today I had a "Aha" moment. When I began this Blog my life was less stressful, however during this past one and a half years my youngest son has been fighting for his life. The most amazing thing is the doctors do not know where both infections came from? When I close my eyes the feelings just flood my body. My stomach gets Butterflies, my heart changes beats and my minds runs rampant with too many thoughts to chase.

He was diagnosed with a Staph MRSA, unknown how it entered. He fought Staph the first of the year and almost died two times. Then at discharge when I picked him up he was so weak and frail he hardly made the trip home (four hours). He was out of the hospital one day before being readmitted. Within five days of his readmission he was on deaths door. Seven days later he was getting 3 transfusion for his blood count was dangerously low. His T cell count was ten, yes I said ten! And they still had no diagnosis.

I have decided to step away from the original theme of my Blog and try to use this time to work through a life  altering time for me and the yet unknown future for my son. As a writer I see things differently at times then the normal person. I feel everything more intently and more sensitively then some. I am a spiritual being as my son was and since all of this; has returned to his own spiritual path. I feel the things I have been through and still must deal with for he is far from healthy, but he/we are determined to make the finish line.

I am brimming with emotions and not yet released stress. I have questions, curiosities and a need for explanations if not answers. The most perplexing oddity is his second diagnosed infection is in the TB  family, but not TB. It affects his immune system, his vital organs, his lungs, and his bones. Now keep in mind while struggling to survive with this added and new infection, the Staph had invaded his heart and heart valve. He was scheduled for "Open heart" surgery at 29 years of age! He has lost 30 pounds on his 5'11" frame. He has gone from a strapping well nourished handsome young man, to a thin and frail older looking young man who has lost a lot of his  beautiful black hair due to "massive"doses of at times 4-5 IV antibiotics, which also caused other issues like vital organ shutdown to discoloring his beautiful smile due to the medications.

As a divorced Mother it has been hard on me. I have always been a strong person but this task has stretched my inner strengths to endure places I never knew existed. So please allow me to share this part of my life before picking up on my blog as I had planned to pen for you. I see somehow they have began to intertwine together. So for now I will breathe and clear my mind for now. Tomorrow is another day.

Bonsoir my beautiful friends .. Please excuse my long absence .. My youngest son has been fighting a life threatening infection that he inhaled through the air .. Something I could not fathom happening to him to us .. But I have put my writing on hold until he is stronger .. He has had to go through open heart surgery just to survive .. It has been a very, very hard past year and a half for us all, especially him .. I will return soon with the remainder of many words to share with all of you .. Once again please indulge me during this time and stay connected through my Twitter Brialalexi@twitter.com . Merci beau coupe, Alexi