Dying is a lonely journey. Not only for the sick person but also for the family. As hard as we may try to avoid death, the truth is that we do a lousy job of it. Science and medicine will certainly postpone it, even staying healthy might seem to delay it, but the harsh reality is that death does not wait for you, it does not ask you, and it does not listen to you. Death ignores your feelings and wants; you do not matter to death…Death is the only certainty in life! We need to remember that our existence here is fragile, and we never have as much time with people as we think we do. If there is someone or someones out there that you love, don’t neglect that and don’t put off engaging with them because waits for no-one… Vic's Journey ended on 18 January 2013 at 10:35. She was the most courageous person in the world and has inspired thousands of people all over the world. Vic's two boys are monuments of her existence. She was an amazing mother, daughter, sister and friend. I will miss you today, tomorrow and forever my Angle Child.
Eleven years and ten days ago Vic had her first blotched back surgery that lead to 81 abdominal surgeries. She lived another 4027 days with excruciating pain, indignity and misery because of the ego and arrogance of a neurosurgeon. Her little body systematically being destroyed by the sepsis left behind by an idiot doctor.
Dr FS, you arrogant fool, you stole my daughter’s life, you stole a mother from two young boys, you stole her smile, her joy, her laughter, her marriage, her hope! You gave her despair, pain, a mangled broken body, faeces running out of her intestines into a bag, an open wound.
You coward, you would not face me in the passages of the Milpark ICU. You denied me the truth. You stole my child’s life!
You called my child a morphine addict. You withheld opiates from her after surgery. You SAID that the sepsis in the Pro-disc could be stopped with antibiotics…It was not necessary to remove and replace it…. 4027 days later it took her life…. Her little body riddled with infection, her body burning up with fever! For 4027 days she suffered!
You condemned my child to 11 years of horrific suffering and misery. Not a single day of her last 4027 days was she without pain.
I wish you saw her tears of pain whilst she was packing her little boys lunch boxes. I wish you heard her 4-year old son say “Don’t worry Mommy. I made my and my brothers beds because your back is sore”. I wish you saw the despair in her sons eyes. She was never able to give them a “normal” life. You ensured that they spent their childhoods in their sick mother’s bedroom and not in the garden playing ball with her…
I still hear her saying “Mommy I am so sore even my ears ache…”
What do you hear? The crisp sound of money? Certainly not my little girl’s screams’ of pain!
If only you said those magic words…”I am sorry….” You arrogant fool the only words you uttered were “I refuse to accept that I am the cause of Vicky’s condition…”
Coward! I hate you. You have my daughter’s death on your conscience. I hope you rot in hell!
My poor child had a horrible night. The pain was under control, but her arm still throbbed, and she was restless. I was busy with some Christmas gifts. I tried to go to sleep, but gave it up as a bad job. So I wrote a post. At 2am this morning I had just “published” when Vic rang the intercom.
The intercom is her 911
I ran down the passage knowing that my poor child had vomited again. The poor little thing was standing in the shower covered in her 7 pm dinner and antibiotic tablets. The food had not digested at all. She was shivering and crying.
I cleaned up whilst Vic showered.
“I am sorry Mommy. I am so sorry Mommy”… Vic sobbed.
“I can’t do this anymore Mommy. I don’t want to live like this anymore….”
I eventually got into bed at 5am. Three hours sleep used to be enough sleep when I was younger. I think I am getting old. I need more than 3 hours. Maybe it is time to look at a night nurse…..
Hospice called early this morning. The antibiotics have been changed to IM injections. We cannot put up an IV drip. Sr Siza told Vic she should be admitted to hospital to have the abscess lanced and drained. Vic refused. “No more hospitals. Mommy you promised…”
Monday morning Dr Sue will come to the house and do the procedure here.
Yesterday I spoke with a wonderful young man, Marchelle. I was privileged to have worked with Marchelle worked for a couple of years. Unfortunately we lost a large contract and had to go our separate ways.
Marchelle has a pure heart. He is selfless and one of the very few people I trust with every fibre of my being. Marchelle has never let me down.
Marchelle told me he is following my blog. He asked me whether I thought the situation is truly as bad as Hospice say it is. I said I did.
He asked “what is different this time? You have been told so many times that Vic was dying, and then she bounces back…”
I started giving him the facts; Vic is in renal and hepatic failure… This time she cannot bounce back. Organ failure is organ failure…. Talking to him I thought “Marchelle is right! Why am I giving up this time? I have NEVER given up on my child, and I will not give up now.”
I walked into Vic’s room and stood in the door looking at my beautiful little girl sleeping. I am so tired that I am allowing the negativity of the situation to get to me. It was however only at 4:00 am that the reality of Vic’s situation re-settled around my heart like a lead jacket – I know my child has had enough.
Marchelle said he prays for us every day, and I believe him.
This morning Vic took her precious boys to pick up their report cards. Both Danie and I said we would take them. Vic very politely refused. She wanted to take her boys. She wanted to be first to see their marks. Maybe for the last time…
She was absolutely delighted with their marks. The boys had worked hard and deserve every mark they received. I wonder whether the boys will remember in the years to come that their Mommy got out of her sick- bed to go with them to collect their 2012 report cards.
We are so proud of them. They are brave kids.
On Sunday we will celebrate my birthday. On the 24th we will have our first Christmas dinner with Lani, Tom and all their kids. Simone still believes in Santa! On the 25th we will go to Church. On the 26th we will celebrate Jared’s birthday. On the 27th we will start planning our New Year celebrations.
Forward planning is “The power of positive thinking”…
Vic’s arm is very painful. The antibiotics have not started working yet. Dr Sue will come and see her tomorrow morning, and we will then decide whether it warrants hospitalization. Obviously Vic need intravenous antibiotics and her tissue is too poor….
Tonight Vic had one of her worst vomiting spells yet. It happened after 02:00am and her dinner of 7.30pm had not digested yet. It is obvious that the oral antibiotics are not being absorbed.
Vic was very tired today, but insisted on going with Jon-Daniel to the orthodontist. In years to come will he remember that his mommy was with him when he heard his orthodontic treatment ends on the 1st of February at 09:15am?
My sister phoned tonight. She categorically told me that I have no business injecting Vic. Nurses go to College for 4 or 5 years so they know what they are doing…. I did not even bother to explain that it is the Hospice site that is bad… My two sites are only in the beginning stages of going septic… I wonder whether she remembered that Vic has sepsis in her spine and abdomen…
The pethidine has kicked in. My child is in a pain-free sleep. I will now try to sleep. Tomorrow may be a rough day.
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 poetSamuel 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!
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.