Vic’s own journal 24.3.2003


Vic and her boys 1999
Vic and her boys 1999

A glimpse into Vic’s life and soul…a journal entry she made on the 24th of March 2003

“And so it begins.  Tomorrow is the first surgery of this year.  My poor children. My family.  This is so difficult.  I am panic-stricken, but not about the surgery. I promised Jared we would have a nice school holiday. It’s his first holiday and he was so excited about staying home with his mommy.  I’m his mommy….  Do you know that?  It doesn’t always feel like it. Do you understand? Do you know what I mean?  I’m sure you know what I mean. It doesn’t always feel real. I carried them.  I gave birth to them but there are days when they don’t even feel like my children.  What if I die tomorrow?  Are they going to remember me? What have I really meant in their lives?  Everyone is so amazing about my bone disease that I sometimes feel smothered by their love.  Does that make sense? Does that make me ungrateful?  I feel so guilty. People have been unbelievable.  I never knew that there were so many special people in this world.  I have been carried on the wings of their prayers.

My poor children.  I already miss them.  I know this sounds jumbled but that is how I’m feeling.  I feel like there is a hole in my stomach. I never slept last night. Again.  I always think that Col and I will be closer or at least loving the day before my ops because everyone else is.  But it never is that way. People are so amazing. Everyone phoning and wishing us well and saying prays for us, but then I don’t get to spend any time with the children or Colin. We land up shouting at the kids, because they keep trying to get our attention.  We try to eat and the phone rings. We try to bath and the phone rings. Colin asked me to send off some documents, to the auditors and I promised I would do it this morning and by the time he got home I still had not done it, which already irritated Col.  So I sent them off while Col and the boys ate dinner and my food stood getting cold.  What if I die tomorrow?  I wouldn’t even have enjoyed my last dinner with my family.

Mom does placements in East Africa and I help out by making the phone calls and making appointments for the interviews. (I get paid for it, very well at that). And I really enjoy doing it.  It is something that I know I am good at.  I am an organiser by nature.  I become obsessive with the details and the smaller details to make it go smoothly.  The only thing is that mom only found out last night that we needed to do 6 placements and the guys from East Africa are coming on Monday and mom still needs to do the filtering process before they arrive.  Today is Wednesday.  Tomorrow is hospital. Mom starts interviewing Friday. She is interviewing on Saturday as well. Mom always says if you want something done give it to a busy person.  But today, I feel swamped.  I like things in little neat packages. Not disorganised.  I specially kept Jon-Daniel home because of me going to hospital and I did not get to even have a game of fingerboard with the children. I only found out on Tuesday that I was being operated on Thursday.  I haven’t packed yet.  Col and I are bickering, because I’m not getting to him and today he had a very important meeting with his boss.  And we couldn’t get around to talk about it.  It was about his package.  We are really battling financially.  But that’s another story.  (I know you know what I’m talking about.  We all go through it at some point in our lives.)  I was so proud of Colin.  To approach his boss for an increase was extremely difficult for him.  It has taken him 4 months to do it. Colin is very proud. I think most men are, but Colin comes across as very blasé, which he really isn’t. 

I become tearful when I think of going back to hospital.  It is so difficult for me and people don’t understand that I’ve built up such a resistance to hospital.  What really hurts is that I spend so much time in hospital that people don’t come and see me especially if I’m only in for a few days.  Life just keeps going on. Nothing changes. It was the same after my father died 3 years ago.  I so wished life would stand still and mourn with me.”

The albatross


http://cedequack.wordpress.com/2007/11/29/el-mundo-de-los-albatros/

The albatross is a large seabird with a wingspan of up to eleven feet. The albatross are regarded as the planet’s ultimate frequent flyers.  The albatross don’t flap their wings, they use wind energy.  An average black-browed albatross may cover 100 miles a day during its lifespan of more than 40 years.  Over a lifetime, an albatross may cover 1.5 million miles.

A master at gliding, the albatross can stay aloft on virtually motionless wings for many hours at a time. For that reason, seamen used to believe that the albatross had magical powers.  There was also a belief that albatrosses, hovering endlessly above the ships at sea, contained the souls of lost sailors, former comrades of the sailors below. Many sailors believed that disaster or death would haunt anyone who harmed or killed the bird.

 In 1798 the great English poet Samuel Taylor Coleridge made albatross mythology the basis for his famous poem The Rime of the Ancient Mariner. The Ancient Mariner (that is, the “old seaman”) tells the story of how he, while on a ship at sea, killed an albatross for no apparent reason. Later the wind stopped blowing, and the ship could not reach port to get fresh water.

The crew assumed that the disastrous turn of events occurred because of the death of the albatross. Angry at the Ancient Mariner, the crew picked up the dead bird and hung it around the man’s neck as a symbol of guilt and punishment. The profound intent of the symbolism was reflected in the Ancient Mariner’s own words:

“Instead of the cross, the albatross

About my neck was hung.”

 Today that imagery has generalized, so that anything that causes deep, persistent anxiety can be called an albatross. And an encumbrance that hinders accomplishment is an albatross around one’s neck.

(Principal sources: Oxford English Dictionary; Darryl Lyman, Dictionary of Animal Words and Phrases, Jonathan David Publishers, http://www.jdbooks.com)

Vicky suffers from Osteogenesis Imperfecta, a brittle bone disease.  In people with Osteogenesis Imperfecta, one of the genes that tell the body how to make a specific protein does not function. This protein (type I collagen) is a major component of the connective tissues in bones. Type I collagen is also important in forming ligaments, teeth, and the white outer tissue of the eyeballs (sclera).

As a result of the defective gene, not enough type I collagen is produced, or the collagen that is produced is of poor quality. In either case, the result is fragile bones that break easily.  Collagen in the body is what cement is in a building.  It keeps the tissue/bricks together!  Vicky has poor quality collagen.

Vic has a very bad spine.  Her neurosurgeon decided to do experimental surgery in 2002.  The Prodisc Total Disc Replacement is an implant designed to mimic the form and function of a healthy intervertebral lumbar disc. It is implanted during spinal arthroplasty after the diseased or damaged intervertebral disc has been removed. The goal of artificial disc replacement is to alleviate the pain caused by the damaged disc while preserving some or all of the natural motion of the lumbar spine. By preserving the natural motion, it is hoped that the adjacent levels of the spine will not be subject to additional stress as they are in traditional fusion surgery.  http://www.spine-health.com/treatment/artificial-disc-replacement/fda-approves-prodisc-lumbar-artificial-disc;  

Vic had the Prodisc procedure on Wednesday morning, the 13th of February 2002.  The operation was scheduled to last “two hours and thirty-seven minutes”.   Six hours after Vic was pushed into theater we were told that she is in recovery.  Vic would go to ICU for “pain control”.

She was pretty out of it the entire Wednesday and Thursday.  Friday Vic was conscious and in dreadful pain.  No amount of morphine brought her pain relief.  Her face and nose itched in a reaction to the morphine.  Vic was losing her mind with pain.

Early Friday morning I cornered the surgeon.  He said she is fine.  I kept badgering the ICU staff to increase her pain medication.  I pointed out that her heart rate was elevated and she was running a temperature.  Her breathing was shallow and fast.  If it was today I would have recognized the danger signs.

That evening I was too scared to leave.  My child was in trouble.  Just after 8pm the doctor came and spoke to me. He explained that Vicky’s tissue is extremely poor (surprise surprise!!) and that there was a small chance that her bowel may have been perforated.  The X-rays did not show up anything but my concern had “alarmed” him.

“Mommy, you must decide.  We can take her back into theater and check her out.  The chances are that we are going to subject her to unnecessary anesthetic and surgery.  The decision is yours…”

“Take her back to theater tonight” I said

“I will get a specialist surgeon to do the surgery” he said.

At 9.30 pm Vic was pushed into theater again.  Eleven hours later she was rushed back to ICU.  Sunday the 17th of February Vic went back t theater for a further 9 hour surgery.  She came out ventilated.

She spent 22 days on the ventilator hovering between life and death.

Doctor arrogance and negligence has led to almost 11 years of sheer undiluted hell and misery.  I wish there was a way I could make the arrogant fool pay for Vicky’s lost life.  I wish I could put him in Vic’s shoes for one day.  I wish with every fiber in my body that I could make him give the boys back their mother.  I wish my child could be pain-free.

The Prodisc was never removed.  The Prodisc is systematically spreading sepsis to Vic’s intestines.  Thank God for adhesions.

I digress.  The specialist surgeon, Brendan Bebington, which Dr Frank S tried to get to do the surgery that Friday night, wife was in labor   His locum was called in.  Years later (after surgery maybe 30) we ended up back with Dr Bebington again.  He has managed to keep Vic alive for many years.

Brendan calls Vic his “albatross”.  He is still consumed by guilt that he wasn’t available to do her emergency surgery…  I wonder whether the neurosurgeon ever thinks of her?

I want to reiterate at this point that the Prodisc is an excellent alternative to spinal fusions.  Surgeon arrogance is the cause of this disaster!  Giving the choice again, we would more than likely opt for the same procedure again.  Different surgeon.

When the albatross glides across the skies it is stunningly graceful and beautiful. But when the albatrosses webbed feet touch down on earth it walks clumsily, like a staggering drunk, and becomes the object of ridicule and pity.

One day Vic will soar through the sky, graceful and beautiful.  Free from pain and suffering!