SET YOU FREE


A dear blogger friend of mine, Judy Unger, http://myjourneysinsight.com/ has generously mailed me a parcel with some of her songs.  She also wrote me a very touching email and appended a beautiful song sung by her.  The song, SET YOU FREE, http://judyunger.files.wordpress.com/2010/10/set-you-free-9_26_12-copyright-2012-by-judy-unger.mp3 was written by Judy when she faced losing her father and is hauntingly beautiful!

SET YOU FREE - Judy Unger
SET YOU FREE – Judy Unger
SET YOU FREE
 You’re hanging on as night turns to dawn
I know you can’t stay and soon you’ll be gone
we both know it’s hard to let go; wherever you are my love won’t be far
your smile, your touch, your voice, your face; your essence I will never replace
though I long for you to hold me; I need to set you free
There is no fear and your leaving is clear
we’ll still have our love it remains with each tear
 I cry as you leave but I truly believe; as you leave my sight we’ll both be all right
your smile, your touch, your voice, your face; your essence I will never replace
though I long for you to hold me; I need to set you free
though you have flown to somewhere unknown
we’re never apart ‘cause you’re here in my heart
your smile, your touch, your voice, your face; your essence I will never replace
though I long for you to hold me; I need to set you free
though I long for you to hold me; I need to set you free

Vic is not having a good day.  She is so brave, but it is clear to all that she is slowly losing the battle.

The cellulitis in her arm is slowly clearing, the pain and nausea is under control but Vic is weaker.  She looks old and drawn – the pain clearly etched on her little face.  My heart physically aches when I look at her, and I know that my love will follow her, wherever she may go..

I know I must set Vic free.  I need to release her from the hell she lives.  I echo Judy’s words “You’re hanging on as night turns to dawn; I know you can’t stay and soon you’ll be gone; we both know it’s hard to let go; wherever you are my love won’t be far”  

Thank you Judy for your compassion and sharing your beautiful songs with me.

“Next year my mom and I are going to Italy”


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Sue saw Vic this morning.   Her liver is very distended and exerting pressure on the right lung.   I now have to use her little arms and legs as injection sites.  I HATE injecting her in the legs.  The doctor fears that she will develop abscesses on her bum.  The entire derriere area is full of lumps and bruises.  When I inject her the injection site becomes “lemon-peely”.  The immediate area swells and becomes hard.  Sometimes there is a fair amount of bleeding or serum loss.  Her tissue is POOR!!!

I discussed various central line options with Sue.  Vic refused point-blank to even consider it.  Vic has been mainlined so many times.  She always asked the anaesthetists to not tape her hair to the central line….  Vic went into septic shock from a CVV, had the needle inserted into an accessory vein and had to be returned to theatre for the removal of the needle and the cauterization of the puncture wound in the vein….  Due to her poor tissue and bleeding tendencies it took two hours!

So we discussed the way forward.

Sue gave us a script for Pethidine.  We will alternate the morphine and Pethidine six-hourly.  The poor pharmacist….  She went into shock when she heard that the morphine is NOT being replaced by the Pethidine… that it is in addition to the morphine.

Now it is only a matter of time.  Vic’s organs are slowly shutting down.  My child is gently being eased into death.

The entire day it echoed through my mind “we cannot stop this.  It is happening”

Vic is calm and serene.

“Next year my mom and I are going to Italy” she told Sue today.

“Then I can die…”

“We will find a way my love” Sue said…

“It is closer that she realises” Sue said to me at her car

Do I tell her?” I asked

“No, her body will…” Sue said

I cannot bear the thought of living without Vic.

 

Endometriosis, abdominal surgery, fistula and adhesions…..


Vic has had 81 abdominal surgeries in her life.  Vic’s first abdominal operation was at the age of 10 when she had her first batch of endometrioses surgically removed.

Endometriosis is a gynecological medical condition in which cells from the lining of the uterus (endometrium) appear and flourish outside the uterine cavity, most commonly on the peritoneum which lines the abdominal cavity. The uterine cavity is lined with endometrial cells, which are under the influence of female hormones.

Endometriosis is typically seen during the reproductive years and it has been estimated that endometriosis occurs in roughly 6–10% of women.

About 93%–100% of people undergoing abdominal or pelvic surgery will form adhesions, but luckily most do not have complications of the adhesions.  Adhesions may also result from infectious processes, such as pelvic inflammatory disease.

Abdominal adhesions are bands of fibrous scar tissue that form on organs in the abdomen, causing the organs to stick to one another or to the wall of the abdomen. Scar tissue most commonly develops after abdominal surgery, in which organs are handled by the surgical team and are shifted temporarily from their normal positions. It can also form in people who develop peritonitis, an infection that has spread to the membrane that covers the abdominal organs. Vic has developed peritonitis on numerous occasions.  Peritonitis usually occurs after appendicitis or another abdominal infection such as Vic first developed after her blotched surgery when her small bowel was perforated.  https://tersiaburger.com/2012/10/19/the-albatross/

There is no way to prevent adhesions. Abdominal adhesions can be treated, but they can be a recurring problem. Because surgery is both the cause and the treatment, the problem can keep returning. For example, when surgery is done to remove an intestinal obstruction caused by adhesions, adhesions form again and creates a new obstruction in 11% to 21% of cases.  http://www.intelihealth.com/IH/ihtPrint/WSIHW000/9339/9394.html?hide=t&k=basePrint#prognosis

Fibrous Bands of Adhesion – Bowel obstruction

In most patients, adhesions do not cause health problems. In a small number of people, like Vic, the fibrous bands of scar tissue block the intestines either completely or partially. This blockage is called a bowel obstruction, and it leads to death in about 5% of cases. Sometimes, an area of intestine that is affected by adhesions can keep becoming blocked then unblocked, causing symptoms to come and go. In about 10% of small-bowel obstructions, a portion of the bowel twists tightly around a band of adhesions. This cuts off the normal blood supply to the twisted bowel, causing what is called strangulation, and that section of bowel begins to die. When this emergency happens, the person must be taken to surgery immediately. The death rate is as high as 37% in people who develop strangulation.

Literally meters, of different parts of Vic’s intestines, has been removed.  Every time Vic had an obstruction she had surgery.  Vic has needed skin grafts to cover open wounds.  Vic developed numerous gastrointestinal fistulas.  Due to the extremely thin layer of skin covering her intestines the intestines have chaffed through.  Vic would lose up to 7 liters of feces  per day, through the fistula.

Now we cope with partial obstructions on a weekly basis.  We battle with poor absorption because Vic has lost critical parts of her intestines.  Vic will not have further surgery.  My child has been to hell and back.

No more surgery.

Ready for theater….again…..

 

 

 

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!

Vic Update 29.7.2012


Vic finally went to theatre on Saturday evening for an “emergency” operation. The arm was pinned. It is a long story that I will share once Vic is out of ICU.

She is doing well. Pain control as always was a major issue but is now under control again.

I have decided that Jurnista is a wonder drug.

Tomorrow Vic will go back to the ward.

Now we start worrying about the sepsis spreading from the septic spine and abdomen to the virgin arm.

Vic Olympic Champion


Yesterday we did not see the GP for Vic’s arm – she was just too exhausted to get out of bed.

We arrived at the Urologist at 14:30 and low and behold he is at another practice in a different suburb.  The receptionist gets such a big fright because of the size of Jared’s kidney stones that within minutes she is busy arranging theatres for emergency surgery!  Eventually I got her to HEAR what I was saying – the kidney stones are not obstructing the urinary tract!  A new appointment is scheduled for Jared to see the Urologist on Monday.

We arrive home and the doggie parlor people had not picked up JD for her final pampering session.  Anyway she had a better night the previous night and all of a sudden I am doubting my decision about sending her to Doggy Heaven.  Maybe this is a sign that it is not her time!

With minutes to spare, just before I add garlic to dinner, my wonderful, caring friend Gillian arrives.  (Gill is allergic to garlic and 1000 other things…) Out of the blue with armloads of gifts…  A lavender plant and lavender hand cremes for me (to calm me down), rusks for Danie, chocolates for the boys and waterless Magnolia hand sanitizer and linen stray for Vic!  How precious is my friend?  She read my blog in the morning and decided that I need moral support!

So, egg on my blog face… JD is still walking around, Jared is in high spirits because he is not in theatre and after such a bad start Vic is having a good afternoon.  (The Jurnista is working so well!!!)

I was so happy to see my friend!!

Gill and I, over a cup of tea, are sitting discussing Jared’s situation when she asked “Who is his Urologist?”  I told her that it is Dr S; he is new in Alberton so we were able to get an appointment quickly… Gillian went white!   In her clipped manner of speech she declared “Over my dead body!  Do you know what he did to Sandra, (her sister-in-law)?  He left the plug in her when he did her bladder repair 6 weeks ago!  Sandra nearly died!”  Gill then proceeds to tell me that at Sandra’s book club meeting the girls were discussing Sandra’s operation.  Naturally the girls wanted to know who the surgeon was and guess who?  Yes, Dr S…  That apparently triggered two more of the ladies relating their stories of severe sepsis, after urology surgery, to their husbands and the urologist was…. Wait for it….. Dr S!!!!!

There is a God!  Imagine if Jared went into theatre yesterday and he was Case No 4 GONE WRONG???

I had just started writing this posting today when the phone rang and guess what?  Dr Y’s receptionist was on the line.  Dr wants to see Vic… With the speed of lightning I dressed Vic in a tracksuit and sped off to the Doctor’s rooms.  The receptionist nearly fainted when she saw Vic’s hand… After a couple of minutes she said if we had not lived close to the consulting rooms she would have told us to come in on Tuesday next week… she did not feel like working late and yesterday she cut down on the number of consults he was doing because she had stuff to do…!  Obviously her conscience got the better of her and she told him Vic had phoned.  He told her to get hold of Vic to see him today still…

The doctor was shocked when he saw how swollen Vicky’s hand is.  He took the cast off and the arm is extremely bruised and very, very sore.  We had a long discussion and the decision was made that there is no alternative but to operate.  Vic will check into the hospital at 08:00 tomorrow morning and he will operate at 10:00.

I am very concerned about the danger of sepsis.  Obviously Vic will go onto strong antibiotics but she already takes antibiotics every day of her life.  As a matter of fact she takes antibiotics twice a day, every day of her life.  She already has sepsis in the spine and abdomen.   I do however realize that there is no other option but to do the arthroplasty surgery.

I am however concerned that a silly little girl can decide how many patients a doctor can see a day not because of his time constraints but her nail appointment at the beauty parlor…  I am very concerned that a receptionist can play God and could cost my child her arm.  Yesterday it would have been a standard surgery but now it is emergency surgery that has to be performed on a Saturday morning.  What a country we live in!

What on earth can make a doctor appoint such an airhead in his practice?  We end up with a silly young woman who do not realize the importance of being able to distinguish between a patient needing to see a doctor urgently and her +*%&% nail appointment!

I have tried to Google “humerus + sepsis” but the articles I found were just too complicated for me to understand.  So, in faith, I will accompany Vic to hospital and try to get her through the post-op pain and onto the road to recovery.  I can only hope that she will not lose too much functionality

I am watching the opening of the 2012 Olympics and am filled with deep sadness for Vic and other people in similar situations to Vic’s.  Somebody else’s sons and daughters, the perfect athletes, competing for the top sports awards of the world….  Dreams will be realized or shattered.  There will be tears of joy and tears of heartbreak…

Vic has never been able or allowed to do any sport.  People of her age are still climbing the ladder to success.  Vic has never really worked or climbed the corporate ladder.  Vic’s life is over without it ever really started.  Vic literally only knows tears of pain and suffering.  However if there was an Olympics for pain, suffering and endurance, my child would take gold!!

Vicky Bruce, Champion of Champion in the Pain and Suffering Race!   All time winner of Survivor OI.