I don’t want to die


Today has been a very, very bad day. Sr Siza was here when Vic had a violent vomiting spell. Yesterday Vic fractured a vertebra again. Her pain is out of control. Her breathing was shallow.

“I don’t want Jon-Daniel to see me now Mommy. It freaks him out when I can’t breathe” Vic pleaded

I lay behind her back, gently holding her whilst the tears wracked through her little body.

I don’t want to die Mommy. If only I can live for another year….. But I am so tired!” Vic softly cried

Do you think we will be able to do Italy Mommy?” she asked after a long silence

I hope so Baby. I think we must take the boys with us…” I replied

Oh Mommy, can we? We don’t have to go for a long time…” Vic said

We lay quietly for a while. Vic trying to breathe through her nausea and pain and I contemplating how I am going to pull off this Italy thing… Just imagine flying with a caseload of injections and a litre of morphine syrup…

Mommy, I don’t care what you do with my ashes… It was so hard putting my father’s ashes into that wall of remembrance! Are you going to be okay Mommy?” Vic cried

My heart stopped. This was so out of the blue… “You will always be with me. I will not put you into any wall” I said

“I will be your guardian angel.” Vic said

I know but remember I will need some privacy… “I said

Don’t worry Mommy! I will make sure my father doesn’t peep as well” Vic laughed through her tears

“I am scared Mommy…”

I am scared too Vic…”

Christmas’ Past…


Frozen turkeys to be cooked and carved!
Frozen turkeys to be cooked and carved!

Many years ago we started a project, where on Christmas Day, we would feed the under privileged.  The first year we fed approximately 300 people.  The last year (2008) that we ran the project, we fed 1500 people on Christmas Day.  We had three feeding points in different squatter camps and we also handed out little gifts of face cloths, soap, toothpaste and tooth brushes at a TB Clinic.

My late father, who suffered from Alzheimers, came to live with us in 2009, and since then I have not had the time, energy or finances to continue running the project.  The community has however started running a similar project, and they now fundraise themselves.  For many years I cooked up to 50 turkeys, made salad and cooked rice…  (I cannot handle the smell of turkey and my husband becomes nauseous when he has to carve turkey…)  I suppose we are all turkeyed out….

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One of the feeding points. The children are so patient and well-behaved!
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There is no greater joy than giving
Vic and her friend Lee and a community member sharing a happy moment!

“You can give without loving, but you cannot love without giving.” ― Amy Wilson-Carmichael

We also visited the TB Clinic and gave the children in the Pediatric Section gifts.  Young Elizabeth, an 11 year old girl, died two weeks later.  She never let go of her Christmas Teddy Bear…

Elizabeth and her Christmas Teddybear
Elizabeth and her Christmas Teddybear

“Presents are made for the pleasure of who gives them, not the merits of who receives them.”
― Carlos Ruiz ZafónThe Shadow of the Wind

A rare treat - a piece of cake for a TB patient on Christmas Day
A rare treat – a piece of cake for a TB patient on Christmas Day

“Give yourself entirely to those around you. Be generous with your blessings. A kind gesture can reach a wound that only compassion can heal.”
― Steve MaraboliLife, the Truth, and Being Free

When my dad came to live with us I had to stop many of my community projects.  It broke my heart but I knew that it was my “family’s time”  In the words of Mother THeresa – “Let us make one point, that we meet each other with a smile, when it is difficult to smile. Smile at each other, make time for each other in your family.”

2012 will be a Christmas of making time for my family.

A couple of days ago Vic wistfully said “This is my last Christmas Mommy”  I hope she is well enough to have a Christmas that her boys will treasure and remember for the rest of their lives.  This may well be our last Christmas.

Christmas Eve 2009 - (L to R) Lee, Vic, My Dad and I
Christmas Eve 2009 – (L to R) Lee, Vic, My Dad and I

“It’s not how much we give but how much love we put into giving.” ― Mother Teresa

The right to live with dignity


Live_Life_to_the_Fullest_by_HM_Photography

I just read two very insightful posts that Andrew of http://lymphomajourney.wordpress.com posted/reblogged.  The first was under the heading “Why not choose death” http://lymphomajourney.wordpress.com/2012/12/04/why-not-choose-death-sunrise-rounds-sunrise-rounds/ and the second “Morphine too little or to much?” http://sunriserounds.com/morphine-too-much-or-too-little/

I read the articles through the eyes of a primary caregiver who has prayed for her child’s death many, many days.  https://tersiaburger.wordpress.com/wp-admin/post.php?post=3&action=edit .  BH, (Before Hospice), I often blogged about The Right to Die with Dignity…..

Over the past 10 years I have seen my child suffer so much indignity and indescribable pain.  I have seen the despair in her eyes, the helplessness in the eyes of her boys….I have stood next to her bed and physically pulled my hair in frustration – tears pouring down my cheeks.  I have wept before God and prayed for Vic to die.  I begged God to take away her suffering.

I advocated the right to die with dignity.

Vic has been in the care of Hospice for the past 3 months.  In this time Vic has been given a new lease on life.  Hospice cannot change the prognosis but they have given Vic quality of Life.  For the past three months Vic has been able to occasionally get out of bed, go for milkshakes with her boys, she went to Jared’s confirmation and Jon-Daniel’s honours evening.  She completed her photo albums.

Vic is in renal and hepatic failure.  Her tissue is horrendous.  Her pain is under control!  As and when symptoms surface, Vic’s medication is adjusted.  She is treated with compassion and respect.  Her wish is the teams command….

As the situation is now I am so grateful that my child is alive.  I treasure every breath that she takes.  We chat, laugh and cry.  We dream of going to Italy in 2013.

So given the situation now what would I advocate – The right to die with dignity or the right to live?

I have no doubt that if Vic’s pain and symptoms got worse, I would want her suffering to end.  If it remains as great as it is now of course I want her to live.  But it is key that Vic is allowed to live with Dignity!

As much as I advocate the right to die with dignity I believe that the final decision lies with the sick person.  It is not for family or physicians to play God.  The patient has to be the only decision maker.

I must admit that if the decision was mine to make, my child’s suffering would have ended a long time ago.

We all have the right to Live with Dignity.   There is a huge difference between breathing and living…

Breathe may refer to:  Breathing, to inhale and exhale consecutively, drawing oxygen from the air, through the lung http://en.wikipedia.org/wiki/Breathing

Life (cf. biota) is a characteristic that distinguishes objects that have signaling  and self-sustaining processes from those that do not,[1][2] either because such functions have ceased (death), or else because they lack such functions and are classified as inanimate. http://en.wikipedia.org/wiki/Life

BH (before Hospice) Vic breathed.  Now she lives.  She may not live for a long time but she has the right to live with dignity!

 

Relevant posts:

https://tersiaburger.com/2012/06/04/5-6-2012/ No one will love me ever again

https://tersiaburger.com/2012/06/12/12-6-2012/ (Eat, sleep, Vomit)

https://tersiaburger.com/2012/08/17/the-right-to-die/

https://tersiaburger.com/2012/11/15/an-end-of-life-discussion-is-one-of-the-most-important-things-to-do-right/

https://tersiaburger.com/2012/10/01/sometimes-the-pains-too-strong-to-bare-and-life-gets-so-hard-you-just-dont-care/

https://tersiaburger.com/2012/09/14/palliative-care/

https://tersiaburger.com/2012/08/22/rest-in-peace-tony-nicklinson-brave-warrior/

https://tersiaburger.com/2012/08/20/768/ (How to die in Oregan)

https://tersiaburger.com/2012/08/02/5-stages-of-dying/

https://tersiaburger.com/2012/06/13/im-going-to-dance-my-way-to-heaven-because-ive-already-been-through-hell-14-6-2012/

Thank you God


I just finished a batch of choc-chip cookies.  The house is quiet and sweet smell of the biscuits has permeated the air.  The Christmas tree lights are flicking and the first batch of gifts beautifully wrapped.  It is the season of Christmas. Two weeks ago I despaired that Vic would not live to see Christmas. Dr Sue came and saw Vic this morning.  She lanced the cellulitis
abscess on Vic’s arm.  My baby girl was so brave!! Sue told us of a young man who came to see her in her rooms with a small abscess in his face.   He cried with pain.  Sue told Vic what a brave person she is…I was so proud of my little girl. Vic’s heart and pulse rate is very elevated.  She has a kidney infection.  Kidney infections make her tired. I just checked on Vic and she is sleeping so peacefully.  She has a serene expression on her beautiful face and she is truly pain-free tonight. Sitting here I am counting my blessings. My baby girl is home.  I cannot begin to imagine how difficult it would have been if Vic lived elsewhere or if she was married or involved.  I can now care for my child without having to consider my “position” in her life.  I am able to be her mommy and take care of her. The boys are settled and happy living with us.  We love having them so close to us.  They are such well-behaved, kind and helpful boys!  Before Vic moved home the boys, mainly Jared, had to cook most days.  Now they are able to be children. Life has settled into an easy routine.  We have laughter and fun.  We cry and despair.  We hug.  We talk and constantly affirm our love for one another. Vic is spending a lot of time with her boys – talking.  She helped with the preparations for Jared’s 16th birthday party.  Vic passed me the spices when I baked this year’s Christmas cakes.  We laughed when we decided the cake needed another “splash of brandy”.  Vic “chose” her Christmas Cake. My wonderful husband is such an amazing person.  He is my rock and pillar.  He loves and protects us. I am happy and content with our lives. Thank you God for this time of closeness.      

Vic’s sacred tears


There is a Sacredness in tears. They are not the mark of weakness, but of power. They speak more eloquently than ten thousand tongues. They are messengers of overwhelming grief and unspeakable Love. ~Washington Irving

I have been quite busy album-making for Christmas.  Over the past month I have gone through thousands of photos!

One of the most touching photos I came across, was a photo of Vic where she is crying.  She was not crying from pain or fear.  She was crying from pride and happiness…

tears of pride and joy........
tears of pride and joy……..

Then I saw this “Status” of an old schoolfriend and I knew I had to post about the sacredness of tears.  I posted the quote earlier but after going through the photographs I decided to actually write about Vic’s tears.

Vic was a little girl of about 7 years of age.  We were driving home from the school sports day.  I looked in the mirror and saw the tears running down her cheeks….

What’s wrong angel?  I asked

“I also want to run Mommy….” She said

I have seen tears of pain in her eyes more times than I wish to remember.

I have seen tears of fear shimmering in her eyes many, many times.

I have seen tears of sadness roll down her cheeks…tears of despair…

Tears of fear
Tears of pain

I have seen tears of resignation

I have also seen tears in the eyes of her Gastrointestinal Surgeon when he said “No More”

But the tears that I will always want to remember are the tears of pride that Vic has cried.  She has cried at Jon-Daniel’s Prize Giving’s, school concerts and when Jared plays guitar in Church and at recitals, Jared’s confirmation…

Vic’s tears are sacred.  They are like rain on the windows to her soul.  In the words of Eileen Mayhew” “Let your tears come.  Let them water your soul.”

I love you angel child!  Maybe you will cry tears of happiness again one day…

10 days to Christmas Eve…


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It has been a crazy week.  Between Vic, final 2012 business meetings, a brochure photo shoot, visiting grandchildren, Jared’s birthday party and Hospice meetings I have run around in circles.  I have not had time to blog or read all the blogs I am following.

Vic has had a reasonable week.  I can see her getting weaker every day.  At night I give Vic a Pethidine, Zantac and Buscopan injection.  The Pethidine makes her sleepy.   During the day she is able to tell me she needs an anti-nausea injection.  At night the drug-induced sleep does not allow her the luxury of early warning.  Vic projectile vomits every day of her life!

Vic has also had a couple of uncontrolled sneezing attacks and lots of hiccups.  I fear she will fracture ribs and vertebrae if we are not able to control this quickly.  I have started giving her antihistamine tablets.  Hospice tells me it is a symptom of the kidney and liver failure and will get much worse.

Her arm is still very inflamed and painful.  We are now on the 3rd round of antibiotics.  The tissue in her derriere is very poor.  It is lumpy and bruised.  It is becoming more and more difficult finding good tissue where I can inject her.

Emotionally it is really a difficult time.  Vic is spending as much time with the boys as possible.  She is doing a lot of what appears to be “lasts”….

It is 11 days to Christmas, and we are looking forward to a quiet Christmas Eve with the family.  Our gifts are not as extravagant as other years.  Our priorities are simply different this year. This year Christmas will be a time of love and togetherness.

It is 10 days to Christmas Eve…

My dearest Mommy 9.12.2012


my birthday card
my birthday card

Another birthday…..


South African grandchildren
South African grandchildren

Yesterday I celebrated (another) birthday.

Late Saturday night Vic’s restlessness was indicative that she was determined to be the first to wish me.  At 11.30 pm she came through and said “another half hour….. I want to be the first to wish you Mommy.  I just want 30 minutes alone with you on your birthday…”

“No problem angel.  I’ll switch the kettle on.” I said

“I will be back in a minute” she said

I made coffee and checked some e-mails.  At 12:00pm I expected her to come through singing “Happy Birthday” but no Vicky….

I went through to her room and the poor baby had fallen asleep on her bed…

Jon-Daniel came through and brought me a cup of tea on a tray, with a gift and card and a rose!  “Happy birthday Oumie” he said.

He had bought a book I have wanted to read for a while “The Elephant Whisperer” – It is an inspiring, true life drama of a herd of wild African elephants on an African game reserve. The herd is destined to be shot for dangerous behaviour when this special human being, Anthony, intervenes to try to save their lives.  I was so thrilled that he remembered.

Just before 01:00 am Vic shuffled into my TV lounge.

“Oh Mommy, I am so sorry I fell asleep.  I thought I would just close my eyes for 5 minutes whilst you make the coffee…”

We sat and chatted for a while.  Vic shared her good wishes with me and we just sat and spoke.  We spoke about our very special mother-daughter relationship.  We spoke about years gone by and how blessed we are to have this time together. (I cannot imagine Vic married and living in someone else’s home on her final journey.)

The girls, Esther and Lani, arrived at 10:00am with gifts, a cooked meal, dessert and cake.  The grandchildren set the table…  My sister Lorraine and dear friend Judy arrived bearing armloads of gifts.  The grandchildren had written me letters and cards – it was so special.  Vic bravely cooked a pot of rice and had lunch with the family.  All the grandchildren swam and played tug-a-war!   We laughed and joked.

It was a perfect day.

Esther and Lani planned the day to start early whilst Vic is at her best.  As the day progresses so her energy levels decrease.  Immediately after lunch Vic went to bed.  She was in so much pain and absolutely exhausted.

All the grandchildren wanted to stay.

Sunday evening we Skyped my son and his family in the UK.  Vic and Danie spoke.  Vic and Danie Jnr have a special bond.

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Twenty two years ago I married Danie Sr and his four children; Esther 23, Lani 18, Liza 16 and Danie 11…  Danie married me and one, sick, very protected, spoilt brat, Vicky, aged 16.  Vic and Danie Jnr were the two kids who lived with us.  Vic embraced her new family.  (I was petrified of the children!)

Vic’s siblings have been amazing over the years.  I could never have coped as well as I do if it was not for their love, support and encouragement.  The siblings are fiercely protective of their little sister.

Vic and Danie Jnr spoke for at least 10 minutes last night.  It was a sad conversation between a brother and his older, little sister.

“I miss you so much Little Brother” Vic said

“I miss you too Vic.  How are you feeling?”  Jnr asked

“I am battling Boetie (Little Brother) Vic said

“We are coming to visit in April then I will see you Vic”

“I don’t know if I am going to make it to April” Vic said

“Just hang in there Vic.  It is not that long to April…” Jnr consoled her

“I know but I am tired.  I am just missing you” Vic cried

“I will fly over for a weekend.  I want to see you again” Danie promised

Vic was so tired last night.  Her little body cannot handle parties anymore.  She tries so hard.  This weekend we will have Jared’s 16th birthday.  It is only his birthday on the 26th but most of his friends are away for Christmas so we have his friend party an early in December.

I know this will more than likely be another last for Vic.

Esther, Vic and Lani
Esther, Vic and Lani

 

 

 

 

 

 

 

 

 

Kindness and Courage


Reblogged from Ray’s Mom –  http://justiceforraymond.wordpress.com/2012/12/08/2845/

Photo Credit: raysithaca.blog.com
Photo Credit: raysithaca.blog.com
Life is mostly froth and bubble, 
Two things stand like stone,
Kindness in another’s trouble,
Courage in your own”

Adam Lindsay Gordon

The night was not over…


“You ain’t heavy, you are my Mother”

Early this morning I posted “My child is in a pain-free sleep.  I will now try to sleep.  “Tomorrow may be a rough dayhttps://tersiaburger.com/2012/12/07/tomorrow-may-be-a-rough-day/  not realising that the night was not over yet.

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 and her baby Jon-Daniel..
Vic and her baby Jon-Daniel..

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


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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.

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


DSC00053

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.

 

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.

Where to now?


IMG_7374

The subcutaneous driver is down.  By this morning it was obvious that Vic’s tissue was just not holding up. 

On Friday morning I removed and repositioned the driver.  Serum leaked out of the syringe hole for almost two days.  The area is inflamed, hot to the touch, swollen and painful.  Cellulitis has struck!  Yesterday evening I repositioned the driver again and this afternoon I removed it.  So I will now administer the 150mg of morphine and  the 60 ml Stemitil IM.  Vic’s derriere is black and blue and lumpy from the injections. 

Where to from here?  How are we going to control this poor child’s pain?  I can only think that they will have to fit a central line…  Will they do it?  She will have to go into theatre for that!  There is absolutely no way I would allow the procedure without sedation!  Central lines are very susceptible to infection and sepsis.  

Poor baby.  She is so ill.

Today I said to my BFF, Gillian, that it is almost as if, now the decision has been made regarding “her” Hospice, she is at peace.  I sat next to her and thought to myself “I wonder if she will make Christmas?”  But then I thought to myself “Wait a minute…This is Vic…She bounces back!”

Tomorrow her doctor will come and see her, she will go onto a course of antibiotics and bounce back again.  Then we will decide how to deal with her pain…

Central venous catheter   http://en.wikipedia.org/wiki/Central_venous_catheter

 

From Wikipedia, the free encyclopedia
Central venous catheter
Intervention
MeSH D002405

Central line equipment

CVC with three lumens

In medicine, a central venous catheter (“central line”, “CVC”, “central venous line” or “central venous access catheter”) is acatheter placed into a large vein in the neck (internal jugular vein), chest (subclavian vein or axillary vein) or groin (femoral vein). It is used to administer medication or fluids, obtain blood tests (specifically the “mixed venous oxygen saturation”), and directly obtain cardiovascular measurements such as the central venous pressure.

Contents

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Types

There are several types of central venous catheters:[1]

Non-tunneled vs. tunneled catheters

Non-tunneled catheters are fixed in place at the site of insertion, with the catheter and attachments protruding directly. Commonly used non-tunneled catheters include Quinton catheters.

Tunneled catheters are passed under the skin from the insertion site to a separate exit site, where the catheter and its attachments emerge from underneath the skin. The exit site is typically located in the chest, making the access ports less visible than if they were to directly protrude from the neck. Passing the catheter under the skin helps to prevent infection and provides stability. Commonly used tunneled catheters include Hickman catheters and Groshong catheters.

Implanted port

port is similar to a tunneled catheter but is left entirely under the skin. Medicines are injected through the skin into the catheter. Some implanted ports contain a small reservoir that can be refilled in the same way. After being filled, the reservoir slowly releases the medicine into the bloodstream. An implanted port is less obvious than a tunneled catheter and requires very little daily care. It has less impact on a person’s activities than a PICC line or a tunneled catheter. Surgically implanted infusion ports are placed below the clavicle (infraclavicular fossa), with the catheter threaded into the right atrium through large vein. Once implanted, the port is accessed via non-coring “Huber” needles inserted through the skin. The health care provider may need to use topical anesthetic prior to accessing port. Ports can be used for medications, chemotherapy, TPN, and blood. As compared to CVC or PICC catheters, ports are easy to maintain for home-based therapy.

Ports are typically used on patients requiring only occasional venous access over a long duration course of therapy. Since the port must be accessed using a needle, if venous access is required on a frequent basis a catheter having external access is more commonly used.

PICC line

A peripherally inserted central catheter, or PICC line (pronounced “pick”), is a central venous catheter inserted into a vein in the arm rather than a vein in the neck or chest.

Technical description

Triluminal catheter

Depending on its use, the catheter is monoluminal, biluminal or triluminal, dependent on the actual number of lumens (1, 2 and 3 respectively). Some catheters have 4 or 5 lumens, depending on the reason for their use.

The catheter is usually held in place by an adhesive dressing, suture, or staple which is covered by an occlusive dressing. Regular flushing with saline or a heparin-containing solution keeps the line patent and prevents thrombosis. Certain lines are impregnated with antibiotics, silver-containing substances (specifically silver sulfadiazine) and/or chlorhexidine to reduce infection risk.

Specific types of long-term central lines are the Hickman catheters, which require clamps to make sure the valve is closed, and Groshong catheters, which have a valve that opens as fluid is withdrawn or infused and remains closed when not in use. Hickman lines also have a “cuff” under the skin, to prevent bacterial migration[citation needed] and to cause tissue ingrowth into the device for long term securement.

Indications and uses

Indications for the use of central lines include:[2]

Central venous catheters usually remain in place for a longer period of time than other venous access devices, especially when the reason for their use is longstanding (such as total parenteral nutrition in a chronically ill patient). For such indications, a Hickman line, a PICC line or a portacath may be considered because of their smaller infection risk. Sterile technique is highly important here, as a line may serve as a porte d’entrée (place of entry) for pathogenic organisms, and the line itself may become infected with organisms such as Staphylococcus aureus and coagulase-negative Staphylococci.[citation needed]

Triple lumen in jugular vein

Chest x-ray with catheter in the right subclavian vein

The skin is cleaned, and local anesthetic applied if required. The location of the vein is then identified by landmarks or with the use of a small ultrasound device. A hollow needle is advanced through the skin until blood is aspirated; the color of the blood and the rate of its flow help distinguish it from arterial blood (suggesting that an artery has been accidentally punctured), although this method is inaccurate.[citation needed] Ultrasound probably now represents the gold standard for central venous access and skills, within North American and Europe, with landmark techniques are diminishing.[3][4]

The line is then inserted using the Seldinger technique: a blunt guidewire is passed through the needle, then the needle is removed. A dilating device may be passed over the guidewire to slightly enlarge the tract. Finally, the central line itself is then passed over the guidewire, which is then removed. All the lumens of the line are aspirated (to ensure that they are all positioned inside the vein) and flushed.[citation needed] A chest X-ray is typically performed afterwards to confirm that the line is positioned inside the superior vena cava and, in the case of insertion through the subclavian vein, that no pneumothorax was caused as a side effect. Vascular positioning systems can also be used to verify tip placement during insertion without the need to a chest X-ray, but this technique is not yet a standard of practice.

Videos are available demonstrating placement of a central venous catheter without[5] and with ultrasound guidance.[6]

Complications

Central line insertion may cause a number of complications. The benefit expected from their use therefore needs to outweigh the risk of those complications.

Pneumothorax

Pneumothorax (for central lines placed in the chest); the incidence is thought to be higher with subclavian vein catheterization. In catheterization of the internal jugular vein, the risk of pneumothorax can be minimized by the use of ultrasound guidance. For experienced clinicians, theincidence of pneumothorax is about 1.5-3.1%. Some official bodies, e.g. the National Institute for Health and Clinical Excellence (UK), recommend the routine use of ultrasonography to minimize complications.[7]

Central-Line Associated Bloodstream Infections (CLABSIs)

All catheters can introduce bacteria into the bloodstream, but CVCs are known for occasionally causing Staphylococcus aureus andStaphylococcus epidermidis sepsis. The problem of central line-associated bloodstream infections (CLABSI) has gained increasing attention in recent years. They cause a great deal of morbidity and deaths, and increase health care costs. Historically, a small number of CVC infections were considered an acceptable risk of placing central lines. However, the seminal work by Dr. Peter Pronovost at Johns Hopkins Hospital turned that perspective on its head. Additionally, the Institute for Healthcare Improvement (IHI) has done a tremendous amount of work in improving hospitals’ focus on central line-associated bloodstream infections (CLABSI), and is working to decrease the incidence of this particular complication among US hospitals.

The National Patient Safety Goals NPSGs and specifically NSPG 7.04 address how to decrease infections.[8] The NSPG 7.04 has 13 elements of performance to decrease CLABSIs.

The 13 Elements of Performance (EPs):

  • EP 1 & 2 deal with educating staff and patients about Central Vascular Catheters and their potential complications
  • EP 3 specifically directs facilities to implement policies and practices to reduce CLABSI
  • EP 4 & 5 are about how to perform surveillance for Central-Line Associated Bloodstream Infections (CLABSIs)
  • EP 6-13:

– Institute for Healthcare Improvement (IHI) bundle

  • 1. Hand Hygiene
  • 2. Full body drape
  • 3. Chlorhexidine gluconate skin anti-septic
  • 4. Selection of Optimal site for Central venus Catheter (CVC)
  • 5. Daily review of ongoing need for CVC

– Disinfection of intravenous access ports before use

National Patient Safety Goals require documentation of a checklist for CVC insertion and Disinfection of intravenous (IV) access ports before use (scrub the hub). Some literature has suggested the use of a safer vascular access route – such as intraosseous (IO) vascular access – when central lines are not absolutely necessary (such as when central lines are being placed solely for vascular access). Infection risks were initially thought to be less in jugular lines, but this only seems to be the case if the patient is obese.[9]

If a patient with a central line develops signs of infection, blood cultures are taken from both the catheter and from a vein elsewhere in the body. If the culture from the central line grows bacteria much earlier (>2 hours) than the other site, the line is the likely source of the infection. Quantitative blood culture is even more accurate, but this is not widely available.[10]

Generally, antibiotics are used, and occasionally the catheter will have to be removed. In the case of bacteremia from Staphylococcus aureus, removing the catheter without administering antibiotics is not adequate as 38% of such patients may still develop endocarditis.[11]

In a clinical practice guideline, the American Centers for Disease Control and Prevention recommends against routine culturing of central venous lines upon their removal.[12]The guideline makes a number of further recommendations to prevent line infections.[12]

To prevent infection, stringent cleaning of the catheter insertion site is advised. Povidone-iodine solution is often used for such cleaning, but chlorhexidine appears to be twice as effective as iodine.[13] Routine replacement of lines makes no difference in preventing infection.[14]

Thrombosis

CVCs are a risk factor for forming venous thrombosis[15] including upper extremity deep vein thrombosis.[16]

Other complications

Rarely, small amounts of air are sucked into the vein as a result of the negative Intra-thoracic pressure and insertion technique. Valved insertion devices can reduce this risk.[citation needed] If these air bubbles obstruct blood vessels, this is known as an air embolism.

Hemorrhage (bleeding) and formation of a hematoma (bruise) is slightly more common in jugular venous lines than in others.[9]

Arrhythmias may occur during the insertion process when the wire comes in contact with the endocardium. It typically resolved when the wire is pulled back.[citation needed]