Dying is a lonely journey. 31.5.2012

We had a good day!  Vic was up for a bit – she even went to pick up Jon-Daniel from school.  It was the first time in 7 weeks that she has driven.  It could not have happened on a better day.  At 09:30 this morning Jared BBM’d me asking me to come pick up Jon-Daniel from school.  He passed Jon-Daniel in the passage and Jon-Daniel was crying.  Jon-Daniel said he was worried about his Mom!

Vicky dragging her sick body to school to pick up Jon-Daniel defused today.

Vic received beautiful messages from Tatum and Muriel today.  It meant so much to her.  Dying is a lonely journey.  Vic inability to function as a healthy person has isolated her from the world.  Even when people come to visit she is often sleeps through the visit.

I was rubbing cream into her little feet tonight and she looked down and said “Mommy, my head and feet are really quite close together…”  We just packed up laughing!

I remember in 2007 when Vic was so desperately ill, I said to her that my heart hurts all the time.  That I think of her every second of the day and that life did not feel worth living.  Vic replied: “Oh Mommy that is so sad!  At least once a week the boys and I laugh so much that my tummy hurts from laughing!”

Things that I take for granted is an EVENT in Vic’s life…laughing, having coffee in bed with her boys, tucking them in, fetching them from school…  I love this beautiful, brave child of mine.

Please God let tomorrow be another good day!

This photo was taken on 27.3.2010


May God have mercy of your soul… 30.5.2012

I started this blog because I don’t trust myself to talk.  If I start crying I may not stop.  Actually I don’t have too many people to talk to.  For the past 10 years we have been waiting for Vic to die.  Initially, I think,  people believe, that holding a dying person’s hand in the final hours is  “romantic” but then the person doesn’t die…and the world moves along.  People carry on with their own lives.  That is just the way it is.  People battle to handle the emotion, the waiting, the suffering.  And it is okay for them to move on.

It is not only other peoples fault’s.  I don’t have time to visit, go for coffee, phone…  It is a constant juggle between Vic, the boys, work, hospital, pain clinic, family.  Many of my old friends must think I deserted them.  Maybe I have but time in every which way has deserted me.

I have been moved by old friends and acquaintances sending me messages of support.  Thank you all.  I had no idea that people would actually read my blog.

Earlier today I read an blog written by Michael Wolff, a writer,  where he beautifully articulates this dreadful struggle to die. He writes about witnessing a loved one’s inexorably slow, modern-medicine-propped decline and suffering that endlessly stops short of death. It is so true.  I cried. http://www.caring.com/blogs/fyi-daily/the-long-long-too-long-goodbye

Good news!  Prof Froehlich phoned yesterday and said that Vic and her situation has haunted her.  She will do an experimental “procedure” on Vic next week.  Monday to Friday Vic will go to theatre for 5 hours a day for a Ketamine/Lithium/something else infusion.  Hopefully it will erase the “pain memory bank” and her body will lose some of its opiate resistance.  That will be so merciful!!  Vic takes 400mg of morphine, in tablet form, twice a day.  She also takes Stilpayne, Panado, Degrenol, Neurontin, Buscopan, cortisone twice a day with 25ml morphine syrup every 4 hours for breakthrough pain.  The meds is not what is causing her sleeping.

Vic sleeps 95% of the time.  When she is awake it is to whimper or vomit.

Jared has started to display symptoms of severe stress.  His school marks are dropping and he doesn’t sleep.  Like me, he is awake every couple of hours to check on his Mom.  Jon-Daniel doesn’t talk.  He just carries on.  I worry about him – how will he handle The Day, when it comes?

In the movies the Judge says, when handing down the death sentence: “May God have Mercy on your soul” – I pray that God will have Mercy on our souls.  Especially on Vic and the Boys souls…

Osteogenesis Imperfecta … 22.2.2002 to 28.5.2012

Even during my pregnancy, I knew something was wrong with my baby.  Then we did not have gynecologists and my GP, Dr. Geller, delivered Vic on the 31st of August 1974 after a 27.5-hour labor…  I gained (3.6kg’s) 8 pounds during my pregnancy.  Vic weighed 2.5kg’s at birth.  That alone should have been a red alert!

My Dad kept saying “there is something wrong with this baby”.  I got so angry with him when he said that and retaliated by saying “the only thing that is wrong with her is her brilliant brain…”

Vic was diagnosed with Osteogenesis Imperfecta at 18 months.

Osteogenesis Imperfecta (OI and sometimes known as brittle bone disease, or “Lobstein syndrome”[1]) is a genetic bone disorder. People with OI are born with defective connective tissue, or without the ability to make it, usually because of a deficiency of Type-I collagen.[2] This deficiency arises from an amino acid substitution of glycine to bulkier amino acids in the collagen triple helix structure. The larger amino acid side-chains create steric hindrance that creates a bulge in the collagen complex, which in turn influences both the molecular nanomechanics as well as the interaction between molecules, which are both compromised.[3] As a result, the body may respond by hydrolyzing the improper collagen structure. If the body does not destroy the improper collagen, the relationship between the collagen fibrils and hydroxyapatite crystals to form bone is altered, causing brittleness.[4] Another suggested disease mechanism is that the stress state within collagen fibrils is altered at the locations of mutations, where locally larger shear forces lead to rapid failure of fibrils even at moderate loads as the homogeneous stress state found in healthy collagen fibrils is lost.[3] These recent works suggest that OI must be understood as a multi-scale phenomenon, which involves mechanisms at the genetic, nano-, micro- and macro-level of tissues.

As a genetic disorder, OI has historically been viewed as an autosomal dominant disorder of type I collagen. In the past several years, there has been the identification of autosomal recessive forms.  Most people with OI receive it from a parent but in 35% of cases, it is an individual (de novo or “sporadic”) mutation. http://en.wikipedia.org/wiki/Osteogenesis_imperfecta

By her 3rd birthday, she had 41 fractures. In her early teens, the number of fractures reduced. I attribute this to the fact that she underwent intensive physiotherapy to strengthen the muscles and to develop ways of protecting the bone.

Vic got married at the age of 21.  Six weeks later she was pregnant.  Up and till today she vows that she was on the Pill.  The doctors urged her to have an abortion.  Vic refused and said that the baby was a gift from God.  It was a difficult pregnancy and on Christmas Day she went into labor.  Jared was born on the morning of the 26th by Caesarean section.  Vic’s body took a pounding and when Jared was six months old both her wrists were operated on – she could no longer lift her baby.  Jared had to go to nursery school…

Twenty-two months later Vic gave birth to Jon-Daniel.  Once again an extremely difficult pregnancy.  Early in the pregnancy, Vic was confined to bed.  Once again her body took a pounding.

In November 2001 she had abdominal surgery to remove endometriosis and the surgeon advised that her tissue was so bad that he was unable to suture the tissue.   She had heart failure on the operating table; in June 2002 her veins on the right-hand side of her body collapsed totally. Her blood pressure is extremely low (58/31 – 55/30) and she always runs into major problems in theatre. According to the Osteogenesis Foundation, it appears as if the tissue is affected worse than normal in Vicky’s case. We do not have Osteogenesis Experts in SA and in the USA they are only interested in helping children.

In Feb 2002 during a vertebrae replacement, the small bowel was ruptured and she developed septicemia. Once again the Drs said that the tissue was EXTREMELY bad. A tremendous amount of tissue, muscle, and skin had to be removed (TWICE) in an endeavor to save her life.   She spent 22 days ventilated, the trauma counselor was called in and we were told she would die.

For 22 days and nights, I never left the hospital.  On day 20 I prayed and asked God to spare Vic just for a while longer.  I begged, made deals, I pleaded.  In the early morning, during my prayer, an angel choir started singing “What a friend we have in Jesus…” Later that day I heard that it was the nursing staff during handover.  Apparently, they prayed and sang every morning at handover but an ill Jewish patient had gotten a court order against this practice.  He had died the previous night.

I knew then that she would live.

In May 2002 she had a colostomy reversal and the surgeon stated that the tissue had degenerated to such an extent that he would never operate on her again. In July 2002 she had back surgery to release a pinched nerve and the Neurosurgeon stated that the tissue in her back is like “water”. The back is degenerating at a rapid pace. In Feb the Dr’s said that she would need major reconstructive surgery. Stomach muscles would have to be built.  Vic develops very high output intestinal fistula. The intestines are painful. The surgeon stated that the intestines would form adhesions and that basically due to the state of the tissue she is doomed. Her hips, knees, and back need urgent surgery. She was too weak to have the surgery.

In 2007 Vic had 18 operations, she spent the majority of the year in ICU and hospital.  Vic contracted every Superbug in the book, she hallucinated, she developed Acute Respiratory Distress Syndrome (ARDS), had the ventilators switched off and continued breathing…

Now Vic has survived 81 operations in total.  The largest majority of surgeries being abdominal surgery.

February 2012 Vic had a G-Scope and Dr. Bebington  spoke to me after the scope and said “No More!”  Tears filled his eyes when he told me he cannot operate anymore.  There is nothing further he can do for her.  She must go home and nature must take its course.  The next morning he spoke with Vic and when he told her that she had two ulcers, sepsis in the abdominal cavity and a partial obstruction.  Vic said “NO MORE OPERATIONS.  I JUST CANNOT DO IT ANYMORE.”

How amazing?  A 10-year journey summarised in 2 and a bit pages – less than 1150 words encapsulated by millions of tears, years of praying… 3748 days of dreadful pain, suffering, and mourning.  My poor child!  When will it end?

Jared BBM Status 25.5.2012:  With God through pain and suffering we will emerge stronger than ever before…  I don’t think so.  We have all been strong for too long…

Last night was another bad night…23.5.2012

Last night was another bad night. 

Yesterday was the Pain Clinic.  When I gave Vic her 03:00 meds I dressed her in a tracksuit.  I would go ahead and get into the queue and Danie would bring Vic through just in time for her consultation.  I arrived at the Helen Joseph at 7:20 and was 3rd in the queue.  I calculated that if Prof Froehlich was in by 09:00, two patients ahead of us… Vic would have to be there at 10:00 to ensure the minimum wait.  Well, no Prof Froehlich and the two resident doctors started consulting just after 08:00!! I phoned Danie and told him to leave home immediately.  Murphy’s Law they got stuck in the traffic. I had to let two people in ahead of Vic as she only arrived at 09:45… 

Then three hours in the queue at the pharmacy just to be told no morphine syrup again!!!  Without morphine syrup for breakthrough pain Vic’s “life” is sheer, absolute undiluted hell!  Now I have to beg and plead for morphine syrup with GP’s…More doctors’ appointments to drag Vic’s sick little body too…  Now if Hospice would only come in life as we know it will be so much easier!  But Vic doesn’t have AIDS or cancer and no-one can guarantee that she has a maximum of 6 months left…so – no Hospice!!!

At about 01:00 this morning Vic came into my room and got into bed with me.  Her tummy was cramping badly and she was scared.  She just lay with me for a long time, sobbing and talking about her fears.

E.H.Chapin said:  Out of suffering have emerged the strongest souls, the most massive characters are seamed with scars… 

Sobbing her little heart out she expressed her fear of how Danie and I will cope with her death… She asked me to remind Jon-Daniel of how he made her laugh when he is sad, Jared how much he helped her… She tells me I will have to be stricter with the boys after she is gone… She asks me to deliver her eulogy at her funeral…

Oh dear Lord, when will this nightmare end? 

I am your mother – not your excuse! 8.5.2012

“I am your mother not your excuse…” brave words spoken by a true warrior!

Last night at 23:30 I received a BBM from Jared (Vic’s eldest son) “Oumie I want to ask you something and please be completely honest with me.”  I replied: “I will always be honest with you my angel” to which Jared replied “Oumie is Mommy’s time close?”

Tonight we had a family round table.  WE spoke about Vic’s imminent demise, how it would likely happen, a possible sequence of events…we spoke about the fact that there is nothing unsaid between us; that the boys would remain with me and then Vic told them that she is their mother – not an excuse for bad marks or poor behaviour…

We cried.

Vic is vomiting blood.  The pain is excruciating and she is weak and very, very tired.  How much longer before this hell ends?Image

That will be so sore… 6.5.2012

Tonight I gave my beautiful Vicky permission to die.

Vic’s pain is increasing.  I believe the sepsis in her spine has spread. The back pain is devastating.  Also the abdominal sepsis is so much worse.  In January the wound “popped” once a month and little bits of pus came out.  Five months later the pus pours out – every day…

Vic is spending more and more time in bed.  The first words she utters when I wake her in the mornings ( or any time of the day or night) is “Mommy I am not feeling well…”

Tonight she asked me what would kill her…I guessed that it would be an obstruction.  She said “that will be so sore”Image