Tomorrow may be a rough day


Alberton-20121206-01427

 

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.

 

Vic is sleeping peacefully


IMG_4860

It is 12:42am and Vic is sleeping peacefully.  She had a “good” day. In between her naps she had lunch with a friend, a visit from Esther and a walk in the garden with Jared!

Vic’s legs are growing very weak.  The cellulitis on her arm has worsened despite the antibiotics.  It is now oozing pus.  Sr Siza will see her tomorrow, and I believe Vic will have to go onto IV antibiotics.  She had a violent vomiting spell just after she took her antibiotic tablets tonight.  It is very difficult for her to keep tablets and food down.  Despite the six-hourly anti-nausea injections she has….  And of course there is the problem of the poor absorption.

“I can’t do this anymore…” Vic mumbled to herself tonight after the vomiting episode.

The situation is getting to Danie.  My poor husband tries so hard to be strong and make life easier for the rest of us.  Jared and Jon-Daniel are deeply conscious of the situation.

“Life will be horrible without Mommy” Jared said today.  “She takes so much of our time, and such a big space in our lives….  Mommy has such a presence Oumie…”

We spoke about his little brother and Jon-Daniel’s inability and aversion to discuss his emotions.

I realised that the boys are already starting to dread the void Vic’s passing will leave.  Anticipatory grief is a killer.  It is unfair that these two beautiful boys have to experience so much pain and hardship in their young lives.  They should be riding their bikes and getting up to mischief.  Now they are stressed out because their mother is dying.

I am too tired to write anything that makes sense.  I just need to record today.  I never want to forget today.

I want to remember how I felt when I lay with my child this afternoon.  I want to remember her tears when she spoke to her sister.  I want to remember the smell of her vomit.  Maybe it will make it easier to accept later on.

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.

A mother’s love is a glimpse of heaven – Joseph E Beck


A new born Jon-Daniel

Today was another milestone for Vic and the family.  Jon-Daniel turned 14 and he woke up to his loving mother’s birthday wishes and kisses.

I could not help but think back to the day he started “big” school.  Vic was violently ill but refused to be admitted to hospital before Jon-Daniel was taken to “big” school and settled into his new class…  Seven years ago she placed her own life at risk to take her son’s hand in hers and lead him into a scary new phase of his little life.

Vic kneeled next to his little chair and told him school was going to be one of the greatest adventures in his life.  She told him she loved him and he was in good hands.  His brother would look out for him at break.  He had to concentrate and listen to his teacher.  “Mommy will see you after school” she promised.

When we left the classroom Vic collapsed.  Colin took her straight to hospital.  Silent tears ran down her cheeks.

“Mommy, please bring the boys to hospital this afternoon.  I promised Jon-Daniel I will see him after school.”

I do not remember the exact details of that particular hospitalization episode but I do remember what a milestone Vic reached that day…

Yesterday my little girl dragged her body out of bed.  When Vic and the boys moved home a year ago I bought her a doughnut-making machine.  She had not used it.  Jon-Daniel loves baby doughnuts and keeps asking her when they are going to make doughnuts.  So, Vic made baby doughnuts with Jon-Daniel yesterday afternoon.  It wasn’t a big batch but she was absolutely exhausted and in terrible pain after she finished his “birthday doughnuts”.

I wonder if he will ever realise what a superhuman effort it took for his mother to make him birthday doughnuts….

Vic bought Jon-Daniel a sound system for his 14th birthday some time ago.  It has been wrapped and ribboned for a while.  I am so grateful Vic was able to give it to him, in person, this morning….  He was absolutely delighted!  The boys had to go to their Dad this evening so Vic made the decision to take Jon-Daniel out of school early today.  We did not have the normal “tea and cake” thing at home as we simply did not have enough time.  We went to lunch and had a wonderful time!  We screeched with laughter.  The boys joked with Vic because she is so short…. (She loves being ragged about her (lack of) height) and the boys love humouring her!

“Mom can’t do a ‘high five’ Oumie – she is too short…”  They just carried on and on joking with their mom.

Late afternoon, after the boys left, Vic and I quietly sat basking in the milestone day….

Vic said “You did not blog last night Mommy….”

“I know sweetie.  I did reblog the article on Meredith Thomas. (https://tersiaburger.com/2012/10/11/lots-of-tears-with-less-than-a-few-months-to-live/ ) I was too sad to blog after reading that article.  It really affected me you know…”

“It is so sad Mommy.  I wish I could write to her and tell her what an inspiration she is to me…” Vic said.  “I am so scared…. I have a hollow feeling on my tummy.”

We just sat in silence.  I held her little hand knowing what she was saying.  I did not have words for my little girl.

“I have such a good idea for your Christmas gift but I need the boys to help me.” she said

“Well, in 6 weeks’ time the boys will have finished their exams and they will have lots of time to help you.” I said

“I can’t wait that long Mommy.  My health is too precarious.   I must do it now…..”

With a hollow feeling on my tummy I wonder whether we will reach our next milestone….