Mother and Child


In the 206 days since Vic died I have never missed her as much as now.

My UK daughter-in-law and her three girls are visiting. The poor little poppets have all had a gastric bug. The girls are amazing and I love them with every fibre in my body and they love me too. What struck me once again this week is that incredible bond between a mother and daughter. When a child is ill they want their Mommy. There is no substitute for a Mommy.

Dr Christiane Northrup, author of the book Mother-Daughter Wisdom (Hay House), says: “The mother-daughter relationship is the most powerful bond in the world, for better or for worse. It sets the stage for all other relationships.”

No other childhood experience is as compelling as a young girl’s relationship with her mother. Mothers impart on their daughters how she feels about being female, what she believes about her body, how she takes care of her health, and what she believes is possible in life.

Jennie Hannan, executive general manager of services at counselling provider Anglicare WA, agrees. “How a woman sees herself, how she is in her adult relationships with partners, and how she mothers her own children, is profoundly influenced by her relationship with her own mother,” she says.

When Vic was ill she wanted her Mommy. Last year, when she had her arm operation, she was so distraught in ICU that the staff asked me to stay with her around the clock. With each and every major surgery she ever had (excluding one knee operation), my face was the first she saw. Vic knew that I stayed outside the ICU until she was released into the ward. More often than not, I was not allowed to sit with her all the time but she knew I was there.

I am not exactly gifted in sewing or knitting… (It was the only subject I ever failed at school) yet I knitted Vic a massive blanket in 2007 sitting outside ICU and next to her hospital bed. I only ever knitted at hospital and I am a very slow knitter. If we had buried Vic I would have buried her wrapped in her blankie… My life ground to an absolute halt when Vic was in ICU or hospital.

Witnessing this incredible bond the past 2.5 weeks has brought back incredible memories of Vic sitting on my lap, her little arms curled around me and her head nestled into my neck. That incredible trust and reliance between us.

My daughter-in-law and I sit and chat into the early hours of the morning. She has a happy disposition. Her life revolves around her family. She has an easy laugh and great sense of humour. If ever I went into a Quiz Show and there was show business section I would want her next to my side. When she goes to bed she gives me a hug. I love this woman for her kindness and compassion.

I realised how much I have missed that companionship, our chats into the early hours of the morning. Somehow it truly made me realise that my child is dead and I am alone.

Jared, Vic’s eldest has come down with the girls’ gastric bug. His dad brought him home early because he wanted to be home…. He got straight into bed. I sat down next to him and asked him how he was feeling. I could hear the tears in his voice when he said “really ill…” I could hear the forlornness in his voice; his longing for his mother to be sitting on his bed.

Dear Mommy…                                                             Words could never explain what you mean to me…It always meant so much to me that no matter how bad you felt or how sick you were, you always went out of your way to do anything and everything you could for us… Always going out of your way to make everyone’s life easier especially mine…

You were always my hero… No matter how sick you were every morning you woke up and got dressed. Even if you didn’t do anything you always looked your best…

I love you so much mommy… You made such an impact on everyone’s life that you will never be forgotten…you will forever live in our memories as the bravest woman and best Mommy of all time…

No one will ever be able to replace you…

Jared

Jared is alone today. Jon-Daniel lit candles for Vic when he arrived home. Jon-Daniel is alone today.  How can such a tiny, sickly person leave such a horrific void in our lives? A mother and a child cannot be substituted or replaced. It is as simple as this.

Precious Vic, we miss you so much!!  We are all feeling miserable without you.  We miss that incredible bond we had with you.  We want you back at home.

4027 days


Vic

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!

https://tersiaburger.com/2012/10/19/the-albatross/

We need a miracle again….


Daniel and Vic 29-01-07

Sr Siza examined Vic today.  She phoned Dr Sue who will be in tomorrow morning.  She also brought a script with for Dalacin antibiotics.  The cellulitis has spread to all three the subcutaneous sites.

Siza expressed her concern at Vic’s decline…

Last Friday Danie, my husband, came and sat next to me and said “I know everyone says it will be better for Vic to die than live in this pain but I was thinking how hard it will be for us without her…”

That statement really shook me.  Up until now death has been a hypothetical issue… Doctors diagnoses and prognosis…predictions…  I have never really considered living without my child.

Last week Siza and I met with the CEO of Amcare, a large community project that provide community based feeding schemes, HIV/AIDS Counselling, Home-based care, skills development, ARV Clinic, women and children shelters.   We are hoping that they will “host” our Hospice at their premises.

The CEO knows Vicky and the boys.  Jared was confirmed in his church earlier this year.

I shared with them how difficult it was to get a terminally ill person into a Hospice Program and that 95% of the dying population die in pain.  Vernon (CEO) quietly listened to us and explained how difficult fundraising is.  Christians are tight with their money…

Vernon then shared the following with us.

“In 2007 I was driving home from a meeting when I felt this urgent need to see Vicky.  I knew she was in hospital as she was on the prayer list.  I drove to the Donald Gordon (Hospital) and was directed to the ICU.  The nurses welcomed me although it was way past visiting time.”

“Pray for her.  We are switching the machines off tomorrow morning…” they said.

I stood next to her bed, raised my arms and prayed that God would spare Vicky for her little boys.  I stood next to a dead person that night.  Two days later I heard that Vicky did not die when the machines were turned off…”

I just stared at him.  I was speechless…  I had no idea!   It was the first time I had ever heard the story!

In June 2007 Vic had developed ARDS (Acute Respiratory Distress Syndrome) after a series of operations trying to close up an abdominal fistula.  Her body was excreting up to 7 litres of faecal matter a day and she had every superbug the ICU could offer.  On the Tuesday Vic went into respiratory failure and was ventilated.  I was talking to her when the doctors rushed us out of ICU and put her onto the ventilator.  By the Thursday her kidneys and liver had started shutting down.

ARDS is a severe lung syndrome (not a disease) caused by a variety of direct and indirect issues. It is characterized by inflammation of the lung parenchyma leading to impaired gas exchange with concomitant systemic release of inflammatory mediators causing inflammation, hypoxemia and frequently resulting in multiple organ failure. This condition is often fatal, usually requiring mechanical and admission to an intensive care unit.   http://en.wikipedia.org/wiki/Acute_respiratory_distress_syndrome

My BFF, Gillian drove 350 kilometres to be with me.  On the Thursday there was absolutely no sign that Vic could or would recover.  Vic had a DNR and a living will that she had provided the hospital.

That evening one of the ICU doctors, Liam, hugged me and said “Mommy, Vic is tired.  You must let her go…”

Gill, Leeann (Vic’s friend) and I went home after visiting hour to talk to the boys.  They were already in bed when we arrived home.  We sat with them

Guys, you know how ill Mommy has been….Mommy’s lungs are not able to work on their own.  Mommy’s kidneys and liver is also not working that well anymore.  The doctors feel that Mommy will not be able to breathe without the machines and that Mommy has suffered too much.  They think it will be better for Mommy to be taken off the machines…”

Jared quietly started to cry.  Jon-Daniel was stoic.  Jared was 10 years old and Jon-Daniel 8 years old.

“What will happen with us Oumie” Jon-Daniel asked.

“Sweetie, Oumie and Oupie will ALWAYS be here for you.  This is your home.”

Jared cried himself to sleep.  Jon-Daniel just clung to me.  The three of us shared a bed that night.

The next morning early Gill, Lee and I set off to hospital.  When we arrived I said “I am not going into that hospital until I have prayed in the Chapel.”

The three of us prayed and it was with absolute certainty that I KNEW Vic would not die that day.

Family and friends drifted in and out of the waiting room the whole day.  My minister came and prayed for my child.  Everyone said goodbye.

That afternoon Danie and I were allowed to see Vic.  The “invasive” ventilator had been disconnected and she had a mask-like ventilator covering her face.  It was a grotesque sight.

Danie held her little hand and his tears dripped onto her arm.

Oh sweetie” he said, the sorrow and pain raw in his voice.

Vic opened her eyes and said “Daddy”….

Three days later Vic was discharged from ICU….. It was not her time.

Today I looked at her and fear struck at my heart.  My child is slowly slipping away.  Her little body is tired of the pain.  Her little organs are enlarged and diseased.  Her bones weak….

And the realisation hit home…. We need another miracle.

God please have mercy on my child.

One bloody tear


Photo courtesy of http://500px.com/photo/5192248

Thirteen years ago Vic’s dad was involved in a bad car accident.  He was airlifted to a hospital with an excellent trauma unit.

When Vic and I arrived at the hospital we were greeted by a trauma councillor.  He explained that Tienie was being stabilized but that the situation was grave….  It was terrible seeing Tienie lie in the ICU ventilated, swollen, battered and bruised.

The news was not good.  Tienie would be a quadriplegic if he survived….

Tienie was one of the most vibrant, energetic party animals I ever knew.  We were childhood sweethearts.  We started dating when I was 13.5 years old.  I have photos of us dancing at his 16th birthday party.  We got married very young.  We got divorced very young.  We remained friends and business partners until his death.  Tienie was an accountant by profession and hated every second of it.  He turned to property development and went from one cash flow crisis to the next.  He was one of the most intelligent people I ever met but also one of the stupidest!

Tienie was a giver… He would give away the clothes off his back.  He hated sleeping.  He said it was a waste of time.  Tienie never cried… he mourned Vic OI diagnosis in a different way.  Some men love cars…Tienie loved women.  He was a loyal friend.  He was the world’s friend.  Everybody loved Tienie.

The day after the accident I had some time alone with him.  I spoke to him and told him that I had forgiven him for cheating on me and finally leaving me.  Standing next to his bed I realized for the first time that I had also caused him a lot of pain!!  I asked him to forgive me.

I also told him that I knew he was worried about his situation at that moment in time.  All he had to do was pray to God and ask him for forgiveness.  I held his hand and prayed for him.

A single bloody tear ran down his cheek.  I knew he had heard me and that all was okay….

The machines went crazy and I was asked to leave.  I knew Tienie was gone as I walked out of the ICU….

Six days later Vic signed the consent forms for the machines to be switched off.  She also signed the consent for Tienie’s organs to be donated.  That is what he would have wanted.

Tienie was buried on his birthday, the 10th of November 1999

Thirteen years later my child still mourns her father.

I know that when the time comes Tienie will be there to take Vic’s hand to lead her towards the light….

I have a living will 31.7.2012


I have become accustomed to the ICU at the Donald Gordon Hospital.  DGH has one of the best Intensive Care Units in the country.  There are always 3 ICU doctors on duty and well as a HIGHLY skilled Head of Department.  No full-time doctors or pain specialists in the Union’s ICU. 

The difference is that the DGH is a private teaching Hospital and does not handle trauma patients.  Only critically ill patients are admitted to the Donald Gordon ICU.   The staff are all ICU specialists.  Ok, I must admit that they also know Vic very, very well.  For the past 7 years they kept Vic alive.  Time and time again she has amazed and astounded them by surviving  every conceivable Super Bug,  ARDS (Acute Respiratory Distress Syndrome), sepsis, organ failure… they know exactly how her body reacts to pain and how she reacts to different drugs.  The doctors that work in the ICU do work at the Pain Clinic.  They understand the benefits of post operation Ketamine Infusions. 

Over the years Vic has spent months and months in the DGH ICU…

When Vic was admitted to ICU at the DGH the last time, one of the doctors said that if she ever decided to give up her fight to live, he would not fight for her.   He knows what she has been through.

This past weekend I spend a lot of time in the Union’s ICU.  More time than I have ever been allowed to spend in the DGH’s ICU. 

Vic, on Sunday morning, was like a wild animal caught in a trap.  Her eyes were crazy.  Vic’s pain levels were horrific and the ICU staff did not know how to handle it.  On Saturday night after the surgery I was not allowed to stay with her, despite the doctor’s instruction to “Allow the mother to stay”.   I had to sit in the “Comfort Room”.  It was so cold in there!  The air-conditioning was turned down to near freezing levels.  I was so cold that the bones in my body ached.  At 03:00 I decided to go home.  I was not allowed to stay with Vic and at that stage she was sleeping peacefully.

 I was woken just after 07:00 by the ICU staff asking me to come to the hospital…

My well behaved, docile child had sworn at her nurse.  She was insane with pain.  Whilst I was telling them what medication she needed to control her pain (yes that is correct) I was trying to calm her down.  I made the mistake of telling her to calm down… That was an epic mistake!!!

We eventually managed to get her pain under control and then the staff asked me to stay…  I basically left ICU when Vic was discharged into the ward Monday afternoon … 

Sitting next to Vic’s bed I looked around and noted that almost 70% of the ICU patients were on life support.  In the one corner there was a young man.  I would imagine that he was in his mid-thirties.  “Was” is correct.  He was declared brain dead yesterday morning.  By now his organs may have been harvested.  Maybe not.  What I am sure of is that his bed is no longer occupied by his imposing body.  Even in the claws of death he had an imposing physique and a presence.  Yet he had no visitors.  Not a single soul came to see him… until yesterday morning when his next of kin were called in and given the news.  One by one they traipsed in, spent a couple of minutes (at most) next to his bed, wiped some tears and walked out…  He was left to die alone.

Other patients had hoards of visitors – each spending a couple of minutes with their loved one and then returning to the cold passages to chat to old friends or other family.  The patient oblivious to their tears and worried faces… battling each “breath” of the artificial lungs… Dialysis machines cleaning their kidneys… blood pressure and heart rate artificially manipulated by chemicals.  Looking at their vitals one would never guess the life-and-death battle raging in their bloated bodies.

I have a Living Will.  I do not want to be kept alive artificially.  I am absolutely certain about it.  I cannot and will not be convinced otherwise.  People should be allowed to die with some dignity.  We all live to dieit is as certain as paying taxes.

What is the purpose of a life with debilitating pain???  I do not want to put my family through it – ever!!  Oh I know my family will miss me.  I know I am loved.  I however know that we live to die.  I look forward to dying.  I look forward to what I have strived for all my life.  Peace, no responsibilities, quiet… I know that I will go to Heaven.  I have already been to hell.  I live hell every day.

If I had been ill I could have handled it.  I would quietly have found a way of leaving it behind.  To stand next to your child’s bed, helpless, hope less and hopeless is the worst situation any parent ever should have to go through. 

So tonight I ask God again:  PLEASE give me the pain.  Allow Vicky to have some quality of life.  Allow her a life.  Allow her to be loved.  Allow her to love unconditionally and without fear.  Please let her be able to run… give her time on a beach; allow her to turn her face into the sun.  PLEASE let her have a normal life, a job, independence or end this journey.

On Monday afternoon Vic was discharged from ICU to the ward.  I asked the doctor to let Vic come home straight out of ICU.  I can take better care of her at home than they can do in hospital.  Vic is home and last night was a night out of hell.  She was so ill, vomiting all night.  She could not keep her medication down.  No sooner did she take a sip or water or it just came spewing out.  Pain control was absolutely out of the question.

Today I received a message from the Pain Clinic that the Hospice application motivation was underway.  Hopefully we will have an answer by next week.  If only I could give Vic meds intravenously it would be so much better.

Vic also needs physiological support/guidance in making peace with her situation.  From her moments of madness in ICU it became clear to me that Vic has some deep-seated resentments and a lot of anger in her.  Vic needs to make peace with her journey and the trip itinerary. 

But more about our family conference and Vic’s emotional battle tomorrow.  It is time for her medication and I need to sleep. 

 

 

 

Vic’s final hospital visit 30.7.2012


Vic's Humerus after Five Weeks

This weekend I saw raw resentment towards me in my little girl’s eyes.

We checked into Hospital on Saturday morning at 08:00.  Vic was seriously peeved that she did not get a private room as per the doctor’s instruction.  Just to aggravate the situation the lady in the opposite bed was truly strange… She was loud and used bad language.  She kept arguing with her husband, she would tell him to make a sexual departure, he would storm out of the room and she would shout obscenities at him.

Then she started telling us about this wonderful neurosurgeon that she works for.  She and Vic ended up comparing back-op war wounds … Of course Vic won the contest hands down!  Vic then said that she had decided no more surgeries…wow!  Did this set the neighbour off!  She took the moral high-ground and started telling us that we must have faith and God will heal Vic.  Vic was in hospital because we keep asking God to heal her.  We should only ask once and then have faith…

She laid hands on Vic when I went downstairs for a cup of tea.  I would never have allowed it!!

Please don’t misunderstand me – I have nothing against religion.  Religion is important.  I do have a problem with a person who curses and swears and behaves in the most appalling manner and then think they can cure my child.  Jared said to me today “Oumie, I don’t want to be a Christian like that …”

I do not stand in judgement of anyone.  It is not for me to judge. I do have a problem with the ultra-religious people who judge others…surely that is the biggest sin?  As my friend Marlene used to say “Who died that you think you became God?”  If you are a Christian then surely you must believe that the blood of Jesus was spilt for ALL sinners and not only a select, elite group of Christians.  If you disapprove of someone’s lifestyle or actions, condemn the sin and not the person…

People who claim to be “deeply religious” have turned their backs on their loved ones because of a lifestyle choice they made.  They will not allow their own sons and daughters into their homes because they disapprove of the lifestyle choice.  Yes, our loved ones make decisions that we do not condone or support but does that give us the right to turn our backs on them because of that?  Surely love is unconditional?  Through thick and thin?

I digress… Immediately after laying hands on Vic the lady swore at her son and made a racist remark… I suppose the Jesus she proclaims only died for white South Africans…

Jared sat at hospital with us all day Saturday.  He is old enough to want to do it!  That young man adores his Mommy.  Jon-Daniel copes in a different way.  He went to a private coaching cricket lesson at the Club in the morning and then went to Nathan, his best friend.  Jon-Daniel makes Vic laugh.  Jared makes Vic coffee.

Two different boys with two different ways of coping and two different ways of expressing their love.   Yet united in their love and despair for their mother.

Vic ended up going into theatre just before 19:00 Saturday night…she was starving!!  Poor little poppet!  I was really annoyed that we had to wait from 10:00 to 19:00 to see the inside of the theatre.  HOWEVER, this is where there is a twist in the tale…a second surgeon appeared in the waiting area and looked at the x-rays.  He was most impressed by the complexity of the fracture…He is a humerus specialist who has in-depth knowledge and experience with Osteogenesis Imperfecta!  I must add that he too had never had an OI patient as old as Vic.  So Vic had two specialists operating on her little arm.

By 21:15 the anaesthetist came through to tell me the operation went well and that he was sending Vic to ICU – mainly because they are petrified of the high dosages of opiates that Vic is on and how it may counteract with the medication that Vic’s on.

History was made Saturday.  A doctor wrote on Vic’s file “Mother of patient to stay with her”!  In the past doctors would make U-turns in the passages to avoid me and here is this wonderful man telling the ICU staff “This mother must stay”.  What a bright and intelligent young man he is even if he charged double medical aid rates.

Vic was however extremely angry with me because she was sent to ICU.  Vic is petrified of ICU and does not appreciate that her pain control is so much better in there than in a ward.  She cannot be given the amount of opiates that she needs, for pain control, out of ICU.

I am delighted as I told the anaesthetist that the Jurnista is new and although I did not give her one Friday night as I was scared that it may adversely affect the anaesthetic and post-op pain control.  (Thank you Google for the fact sheet).  When he said that it is better for her to go to ICU all Vic kept saying was “No Mommy, No Mommy!”  She cried.  I saw the resentment in her dark, sad eyes when she looked at me.

Image
Vic’s Humerus Pinned and Fixed

For once I did not care.  I love my child and I will do anything and everything to spare her pain.

I have to find out which anaesthetic they used.  The last two procedures at the Union resulted in terrible aggression in Vic.  Vicky is normally a meek and mild little soul but boy, did she rip into me and her ICU sister.  She told me exactly what she did and did not think of me.  It was a horrific experience.  I hope and pray that it was the anaesthetic and not actual resentment towards me that triggered her hate speech.

Vic ended up spending 2.5 days in ICU.  I never left her side but to go shower at home and take Jared to the urologist this morning.  The ICU at a standard hospital is actually not equipped to handle someone as ill as Vic and in such a pain control programme.  I also think they were too scared to be left alone with her after the tongue-lashing she gave them whilst I was showering on Sunday morning.

Well this is now behind us.  We will hope and pray that the sepsis in Vic’s abdomen and spine will not attack the pins in her arm.  That Vicky will get better and enjoy some Jurnista quality of life!

I want to blog on ICU’s and what we subject our loved ones to next.  I am just too tired and emotionally drained to even attempt it today.