Chaka’s Rock and bittersweet memories….


Chaka’s Rock is a quaint coastal town on the North Coast of Kwa Zulu Natal.

We have come to Chaka’s for the past 22 years.  Vic loved Chaka’s with a passion and always said that she started missing Chaka’s from the second we packed up until we set foot here the following year.

Vic and her boys 2005

Through every possible circumstance Vic made her way to Chaka’s – with the exception of 2012.  Last year she said “Mommy, I am not going to make it to Chaka’s this year…”

2007
2007

chakas jd

In 2007 Vic had 18 abdominal surgeries.  She developed septicaemia and contracted every superbug in the book.  She was on life support on more than one occasion.  Her kidneys and lungs failed.  Vic developed an intestinal fistula.  It was a high output fistula and she lost up to 7 litres of fecal matter through the fistula daily.  The poor poppet walked around with a machine that acted as a “catchment” for the fecal matter.  Vic was on TPN (Total Parental Nutrition) and not allowed to eat anything.  Her stomach had a gaping wound with fecal matter pouring out of a hole in the intestine.

Vic spent the majority of the year in hospital and reached a stage where she appeared to be like a “lamb being led to slaughter”.  It was such a concern to us that she appeared to have lost her will to live.

Vic at Chaka's Rock - getting ready to have TPN line changed.
Vic at Chaka’s Rock – getting ready to have TPN line changed.
Chaka 2007
Vic in the lounge of the chalet.

It was such a tough decision to make whether we should discharge Vic from hospital to make the trip or not.  The doctors had different views on whether we should go or not.  Two of them felt it would be emotionally uplifting for her to go and a third thought we were “absolutely nuts!”  I am so grateful that we decided to go ahead with our annual pilgrimage, as Vic was able to spend such precious time with us.  Even the bad weather worked in our favour and we spend wonderful days playing Bingo and Trivial Pursuit.

It was extremely difficult to manage Vic’s health in accommodation other than a hospital.  Changing the TPN was a sterile procedure.

On Friday morning, the 29th of June 2007, Vic collapsed was admitted to the ICU at the Albert Luthuli Hospital in Chaka’s Rock.  Vic was transferred back to the Donald Gordon Hospital by ambulance on the Saturday afternoon. 

In a “Get better soon” card that her boys wrote her after our little holiday they thanked her for the most wonderful holiday ever!  Certainly, we had had “better” holidays in our lives but the time that we spent together was so precious.

Vic was only released from the Intensive Care Unit of the Donald Gordon Hospital on the 23rd of July 2007.

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In 2010 I only spent a weekend in Chaka’s with Vic and the boys as I had to fly to the Middle East on business.  .  Lee drove the boys back and Vic flew home.  This is an excerpt out of an email Vic sent me…

“Hi Mommy, boys are great… We had such a great evening last and day today… Jared had Tyron over to visit. We all miss Mommy already!!!! We really hope it goes well there!!! We are all holding thumbs and saying big prayers… Battling with the authorisation for the pain Infusion still. I think I broke another vertebrae on the flight back from Chaka’s. We had a bumpy landing and I am battling to breathe from the pain… I think it’s two above the last fracture.  Can’t believe how much I miss Mommy already.                                    We are all trying to think up a name for Gramps’ new puppy… J-D is still sulking, because I won’t carry her around like Gramp’s does. Can you believe it? Jared said that when we were all in Chaka’s, she didn’t need legs as Gramps’ just carries her everywhere. And I don’t know what she was eating at Moms’ but I know it wasn’t her food, she refuses to eat it, she was so spoilt Jared reckons she lived on sweets and Gramps’ food…                          I wish we were all still in Chaka’s, it was really great to spend the time with Mommy…

chaka 3

Vic in 2012…well, that is a different post….

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

 

 

 

 

 

 

 

 

 

Where to now?


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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

[hide]

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]

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Endometriosis, abdominal surgery, fistula and adhesions…..


Vic has had 81 abdominal surgeries in her life.  Vic’s first abdominal operation was at the age of 10 when she had her first batch of endometrioses surgically removed.

Endometriosis is a gynecological medical condition in which cells from the lining of the uterus (endometrium) appear and flourish outside the uterine cavity, most commonly on the peritoneum which lines the abdominal cavity. The uterine cavity is lined with endometrial cells, which are under the influence of female hormones.

Endometriosis is typically seen during the reproductive years and it has been estimated that endometriosis occurs in roughly 6–10% of women.

About 93%–100% of people undergoing abdominal or pelvic surgery will form adhesions, but luckily most do not have complications of the adhesions.  Adhesions may also result from infectious processes, such as pelvic inflammatory disease.

Abdominal adhesions are bands of fibrous scar tissue that form on organs in the abdomen, causing the organs to stick to one another or to the wall of the abdomen. Scar tissue most commonly develops after abdominal surgery, in which organs are handled by the surgical team and are shifted temporarily from their normal positions. It can also form in people who develop peritonitis, an infection that has spread to the membrane that covers the abdominal organs. Vic has developed peritonitis on numerous occasions.  Peritonitis usually occurs after appendicitis or another abdominal infection such as Vic first developed after her blotched surgery when her small bowel was perforated.  https://tersiaburger.com/2012/10/19/the-albatross/

There is no way to prevent adhesions. Abdominal adhesions can be treated, but they can be a recurring problem. Because surgery is both the cause and the treatment, the problem can keep returning. For example, when surgery is done to remove an intestinal obstruction caused by adhesions, adhesions form again and creates a new obstruction in 11% to 21% of cases.  http://www.intelihealth.com/IH/ihtPrint/WSIHW000/9339/9394.html?hide=t&k=basePrint#prognosis

Fibrous Bands of Adhesion – Bowel obstruction

In most patients, adhesions do not cause health problems. In a small number of people, like Vic, the fibrous bands of scar tissue block the intestines either completely or partially. This blockage is called a bowel obstruction, and it leads to death in about 5% of cases. Sometimes, an area of intestine that is affected by adhesions can keep becoming blocked then unblocked, causing symptoms to come and go. In about 10% of small-bowel obstructions, a portion of the bowel twists tightly around a band of adhesions. This cuts off the normal blood supply to the twisted bowel, causing what is called strangulation, and that section of bowel begins to die. When this emergency happens, the person must be taken to surgery immediately. The death rate is as high as 37% in people who develop strangulation.

Literally meters, of different parts of Vic’s intestines, has been removed.  Every time Vic had an obstruction she had surgery.  Vic has needed skin grafts to cover open wounds.  Vic developed numerous gastrointestinal fistulas.  Due to the extremely thin layer of skin covering her intestines the intestines have chaffed through.  Vic would lose up to 7 liters of feces  per day, through the fistula.

Now we cope with partial obstructions on a weekly basis.  We battle with poor absorption because Vic has lost critical parts of her intestines.  Vic will not have further surgery.  My child has been to hell and back.

No more surgery.

Ready for theater….again…..

 

 

 

What can we hope for when there is no hope?


When Brendan (Vic’s gastroenterologist) took me into the passage, outside Vic’s hospital room, and said “No more.  This is the end of the road” my heart stopped.  How can there be no hope?  Brendan has been so brave until that moment.  It was not easy for him to sentence Vic to the “No Hope” section of her journey.

Where does hope live when we hear the words announced to us, “There is no hope”?  We cannot return to life as it was.

Immanuel Kant, who lived and wrote in the 1700s, thought a lot about the kind of subjects we might label as “the eternal verities”: hope, ethics, God, morality, the meaning of life. Kant came up with three questions that he thought expressed the central human concerns. Here are his famous questions:

What can I know?
What can I do?
What can I hope?

What can I know?
“A large part of Kant’s work addresses the question “What can we know?” The answer, if it can be stated simply, is that our knowledge is constrained to mathematics and the science of the natural, empirical world. It is impossible, Kant argues, to extend knowledge to the super sensible realm of speculative metaphysics. The reason that knowledge has these constraints, Kant argues, is that the mind plays an active role in constituting the features of experience and limiting the mind’s access only to the empirical realm of space and time.”  http://www.iep.utm.edu/kantmeta/

 I know I can only address this on an emotional level. 

I know that life is unfair and difficult! I know we are scared – not only of Vic’s painful journey but of what lies beyond her release from pain.  I know I hate seeing my child suffer and losing her dignity. 

I know I love my child more than life.  I know she wants to live.  I know she wants to love, be loved…..  I know she wants the frustration of facing peak hour traffic on her way to work or back.  I know Vic wants a job.  I know Vic wants financial independence, a trip to Italy.  I know Vic wants to attend her sons 21st Birthday parties, see them graduate, and meet the person they decide to spend their lives with.  Hold her grandchild..…grow old gracefully.  I know Vic wants to walk on the beach, see the sun set over the sea….. 

 I know that Vic is tired of the pain.  I know she wants to die.  I know she wants to live.

 I know dying is a lonely journey.  I know it is impossibly difficult to watch Vic grow weaker every day.  I know I am tired of being sad.  I know I want the boys to be happy…..

What should I do?

I know I should honor Vic’s wishes.  I know that I should try and stay positive for the boys sake.  I should fight harder for Hospice intervention.  I should remain cheerful and snap out of my depression.  I should concentrate on the positive moments in our lives.  I should endeavor to find a way of giving Vic peace – enough peace to let go.


What can I hope?
 I wish her pain control will continue to work as well as it is now…
I hope that her suffering will come to an end.  I hope that the boys will heal in time.  I hope that we will laugh again.  I hope that Vic will find peace. 

I hope that my beautiful little girl will fall asleep and not wake up.  I hope that God will be with her when the time comes

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.

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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.

A day in the life of Vic 15.7.2012


A day in the life of Vic.

I wish for Vic….10.7.2012


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via I wish for Vic….10.7.2012.

I am dying 9.7.2012


Vic and JD. (JD = Jared’s Dog)

It is 20:00 and Vic has been fed, changed, powdered and medicated.  She screamed with pain when I changed her.  Seeing my child sick and in pain, every day of her life , kills me.  I am dying, painfully slowly from my child’s pain.

I don’t know how much longer I can handle this.  The chronic pain I am used to but this new pain is pushing all of us over the edge.

Esther called today and wants Danie and I to go to a Spa, close by, and she and Tracey will take turns in looking after Vic…  How nice is that!!  But I cannot.  I cannot leave Vic now.  Nobody knows her body the way I do.   It is too big a responsibility to hand over to anyone.    She needs lots of personal help.  Vic needs pain meds’ every four hours, day and night.  If she misses med’s she breaks through her pain levels and then it is disastrous.  What if she needs help during the night as she so often does?  What if she vomits and needs me?  No can do!!  I cannot desert Vic.  Until she breathes her last breath I will be by her side.  No matter how long it takes.

Many years ago I promised Vic that I would not let her die alone.

When Jesus was praying  in Gethsemane his disciples fell asleep on Him.  I am so scared that I will fall asleep on Vic in her final hour.  I don’t think Vic is near the end.  I have been around dying people enough to know the signs.  But she needs me now.

Chronic Illness versus Terminal Illness


Chronic Illness versus Terminal Illness.

Who is taking care of the caregiver? 5.7.2012


When my Dad was ill with Alzheimer’s, I subscribed to two forums/support groups.  I suppose I am not good at letting go because I have not left the groups despite the fact that my dad lost his fight against AD on the 20th of May 2011.  On the other hand Alzheimer’s is a terminal illness and there is a lot of synergy between my Dad and Vicky’s journeys.  I don’t think I would have gotten through my Dad’s journey if it had not been for the Caring.com group.  http://www.caring.com/home-care.  The practical advice of caring for an AD patient was of immeasurable help.  The members support helped us as a family in understanding the destruction of Alzheimer’s and recognizing the stages of the disease.

So when I received the latest post: “Who is Taking Care of the Caregiver While the Caregiver is Taking Care?” written By Carol Blackwell Alzheimer’s Reading Room, I was delighted.  I am in such a depression and totally at a lost as how to get out of it. http://www.alzheimersreadingroom.com/2010/05/whos-taking-care-of-caregiver-while.html

I just knew there would be solid, practical advice in the article.

Carol Blackwell’s opening question is: “Are you taking care of yourself? You can’t be there for them if you aren’t there for ‘you.’ Your mood and stress affects their mood. It surely isn’t easy and life is sometimes stressful and difficult. Here are some things that helped me—you can decide if they will work for you.”

Exercise

Carol Blackwell wrote “I know you may be thinking you have no time to exercise because you are so busy taking care of your loved one and too tired at the end of the day. I say, that is exactly why we need to exercise.”

Right on Carol.  I don’t have time.  My days are very long and I don’t get a lot of off-time.  Last year Danie and I went for a walk every night.  Sometimes the boys joined us.  It was great and I miss it.  But I have decided that I will start exercising today!

Volunteer for service to others.
Carol Blackwell wrote:  “I imagine you are now thinking I am really weird. How can we find time to work for others when we are struggling ourselves? For me, initially, I found it was easy to sit in the house and feel sorry for us. We didn’t sign up for this disease invading our lives, we had just had gotten to the point where we could be free from work constraints, etc. Etc. Unfortunately, sitting in the house feeling sorry for us didn’t help much. It wasn’t fun and served no purpose except to make me crabby and Bob depressed. No one wants to be around crabby people.”

Carol you are weird.  I don’t have time to sit and do anything.  I have a career, a household to run, two grandsons to fetch and carry, Vic to take care of…  For many years I was very involved in working with the less fortunate.  I however believe that in the Chinese Proverb “Give a man a fish and you feed him for a day. Teach a man to fish and you feed him for a lifetime.”  Done and dusted.  One day I would love to do some community work again but for the time being I have to concentrate on my family and their survival.  Selfish – maybe…  For now that is the way it has to be.

Do things you enjoy—you deserve it. 
Carol Blackburn wrote:  “What do you find fun and what gives you pleasure? It is different for all of us. I enjoy Wii games—I love the Wii Fitness Plus activities. They are fun. “

Tick.  I love my Children and grandchildren.  I love the patter of little children’s feet in the passages of our home, the sound of children’s laughter, and their little arms around my neck.  I desperately miss my UK grandchildren.  I am permanently miserable when I think of them.  I miss them with every fiber of my body.  Sometimes I am so weepy that I cannot even Skype with them.

I am so happy that Lanie and Tom have moved to Johannesburg.  Now we see them and the girls on a regular basis.  We spend a lot of quality time together.

Yuri, our youngest grandson asks his Mom whether he can’t come visit his Oumie every day before school…

Liza (the youngest daughter) and her husband have finished sailing around the world.  I look forward to flying down to Cape Town to visit with them.  As soon as Vic is able to cope without me we will fly off…

Vic finds the noise a little distressing.  But the little ones know Aunty Vic is ill and are so good!

Carol is right.   I enjoy having the grandchildren around and I deserve to have my grandchildren around me.  Grandchildren are the joy of my life!  And I love playing Cityville on Facebook.

Consider meditation/yoga.
Carol wrote:  “Research has found that taking time to meditate and to engage in yoga is beneficial in reducing stress.”

Maybe one day when I have time… and the energy.

Don’t be a martyr.
Carol wrote:  “Martyrs may be noble, but they really aren’t much fun. You can’t do it all and you shouldn’t have to. Find help if you need it.  Are you in a support group? Check the Alzheimer’s Association link to fine one near you. Join it—it will help to find others who are going through what you are. “

“Is there someone who can come in for a few hours and let you take a break? Someone from church?  A friend? There are people who would love to help us, but we don’t ask. Ask. You owe it to yourself and your loved ones!”

My dearest friend, Gillian, wrote:”I would like to half your work and cares.  Put you in a bed for sleep therapy.  But I know you won’t trust a soul with your family”.  Few people know me as well as Gillian does.  I cannot leave Vic.  There is that beautiful John Lennon song “He ain’t heavy, he’s my brother”.  Vic ain’t heavy she is my baby.

I am trying to get Hospice involved.  Danie does help a lot and so do the boys.  Esther bathed Vic on Tuesday whilst I was at a meeting.  The church and I deserted one another some time back.  I don’t have many friends.

People have their own lives.  We live in a world where we don’t have time for other people’s problems.

Only a mother who has watched her child suffer will understand the despair of another mother.  Will understand how difficult it is to face every day, the depth of despair when you cradle your vomiting child in your arms….to say “Just one more hour baby” when she begs you for pain medication…

Smile or laugh each day.
Carol Blackwell wrote:  

We do.  Today I watched Rango with the boys.  It was so funny.

Cut yourself some slack.
The wise Carol Blackwell wrote:  “Everyone has ‘blue’ days. It’s OK to have a ‘pity party’ once in a while. It just doesn’t help to let those days happen too frequently. Also, don’t beat yourself up. We can’t always be calm, patient, understanding and saint-like. We are all just doing the best we can. Wallowing in guilt for occasional impatience won’t help either.”

This week I am truly wallowing in self-pity.  I have been guilty of impatience, I have lacked understanding.  I am petrified that Vic’s pain and suffering will continue for many more years.  It is strange that Vic is having a better week than she has had in three months.  As Esther said, her eyes are bright and she has mobilised pretty well.  She is less tired… What if this vicious cycle of pain and suffering continues?

Don’t lose hope.
Carol Blackwell wrote:  “There IS a cure for this awful disease. Out there—somewhere, someone is working on it. We just don’t know it yet. It will come. Keep the faith, baby!”

Just as there is no cure for Alzheimer’s at this stage there is no cure for Osteogenesis Imperfecta.  But there may just be a cure for the adhesions that I believe will ultimately cause a fatal obstruction.  Today I found a website where a doctor who claims great success with the treatment of frozen abdomens.  On the surface it seems very positive.  http://www.prweb.com/releases/2012/5/prweb9432209.htm

Anyone who has ever wrestled with God can understand the bargaining prayer. I have bargained with God all of Vic’s life.  If there is a cure I will do this or that…. For MANY years I have put the Church and God ahead of Vic and my family and yet all my love and commitment has resulted in further pain and suffering.  I know this paragraph will result in many emails or comments but I ask of you “Do not judge me if you have not walked ten miles in my moccasins!”

So for today and maybe the rest of the week I will hold onto my new hope.  “Hope removes the blinders of fear and despair. Hope opens up our minds and allows us to think positive under dire circumstances.”  Until I receive a reply to my enquiries…

To all my friends, cyber friends and family thank you for your support and love!  Yesterday I considered stopping the blog as it has opened up fears that I have suppressed for so many years. I however think it is something I must do – for myself.

“I’m tired of living but I do not deserve to die. I am motivated by nothing yet I move on… “


“I’m tired of living but I do not deserve to die.  I am motivated by nothing yet I move on.  I have nothing but I have everything.  I just don’t want to understand.

Muriel posted this message on Vic’s Facebook page.  Today it echo’s my feelings.  I am so tired of living.  I am so tired of this miserable existence that we call life.  Surely, there must be more to life than breathing!

Today was a day out of hell.  I had to leave home early this morning as we were testing some systems that are critical to a contract that we are negotiating.  I got up with great difficulty, showered, and made Kreemy Meal for my family.  Both Jared and Vic need soft foods.  I left on time with strict instructions for Danie as to where and when to collect Vic’s morphine syrup from the Pain Clinic.

Within 5 minutes, I was stuck in terrible traffic.  Five lanes reduced to two…

Once we reached the test site, the subsystem manufacturers arrived 2.5 hours late!!  I phoned Vic to check on her only to be told that she had gotten ill all over herself!  She had to bath and I was not home to help her!  I told her to take anti-nausea tablets, lie down for 15 minutes, and take morphine tablets again.  Once she felt better, she would have to ask Primrose, the helper, to help her bathe.  I could not leave the test site.

Danie phoned to tell me – “No Morphine Syrup – come back next week”.  Some good news was that Esther came to visit and helped Vic bath.  That girl is an absolute saint!  Esther also took Jon-Daniel to the movies.  I am so grateful that he could get out of the house of gloom and illness.

Then the system failed…  The shipment would be delayed by at least another 5 weeks!

Another traffic jam to my next meeting…

An hour and a half later, I left the meeting for home and was stuck in the 17:00 peak hour traffic!  A 20-minute trip became a 1.5-hour trip!  Arghhhhhh

At home, I quickly prepared dinner. Vic has to have dinner by 18:30 as she must take her medication at 19:00.  In my haste I forgot poor Jared is only allowed pureed food so I started cooking (a second meal) some gem squash, potatoes, and carrots for him.  I put it through the strainer and rushed off to his room with a tray and his pureed food.  I do not know what I did but the next thing pureed vegetables and broken Noritake was all over the floor!  I just burst into tears.

I cannot believe that something that I would normally laugh off as an accident set me off.  Poor Jared had to eat soup for dinner.  He is so tired of soup!

Well today, I am fed-up with life.  I am tired to the core of my soul.  I do not want to hear that I am doing a great job or that I am strong.  I do not want to hear anything!  All I want is ONE carefree day in my life!! One day with absolutely NO responsibilities.

Oh dear God, the boys offered to do their Mom’s tablets tonight so I can have a full night’s sleep…What am I doing with my pity party?  I have Vic in tears because she is feeling guilty because of the stress her illness has caused me, the boys feel guilty because I am tired and Danie wants to take me away for a weekend so I can rest and relax…How can I ever relax whilst my child is so ill.  I do know I cannot afford to cry.  It distresses everyone around me.

I need a stronger anti-depressant.

I am going to bed.  I am going to feel sorry for myself in the privacy of my room where I cannot cause more stress in my family’s lives.  Life is already so hard for them.  Tomorrow is another day and we will face whatever life throws at us!

“I’m tired of living but I do not deserve to die.  I am motivated by nothing yet I move on.  I have nothing but I have everything.  I just don’t want to understand.

A lifetime ago…

Vic regrets not going to Italy


Vic regrets not going to Italy.

Vic regrets not going to Italy 2.7.2012


Nothing in the world can ever prepare a parent for that moment  when the death sentence is pronounced over your beloved child.   I remember it as if it was yesterday.

Thank God Vic was in ICU and heavily sedated at the time.  Brendan told us in the passage of the Donald Gordon.  Colin and I went into shock.  We did not ask a single question.  We just looked at him … Mute for that dreadful, heart wrenching, moment.

Later that day Colin and I went to Brendan’s consulting rooms and spoke with him.  I had so many questions and he had so few answers.  He basically said that with the Osteogenesis Imperfecta Vic’s tissue had been affected very badly.  The intestines were very poor and she had very bad endometriosis and abdominal adhesion’s.  The adhesions were the biggest threat…it would almost certainly cause blockages of the gastrointestinal or urinary tracts.  There would come a stage when they could no longer operate or her little body could not take the strain anymore…

Strange Vic knew…when she eventually came round she knew that life as she knew it was over.

When I broke the news to her she was calm.  See, all her life she knew that eventually this day would come.

The doctor recommended that we get in touch with Hospice.  We did.  We had a family meeting.  Colin parents, Danie and I and Vic and Colin.  Colin went through an anger phase.  He felt let down… he thought they would grow old together.  They had two little boys aged 3 and 5…  So many challenges!  So many emotions.  So many medical bills!  In 2002 Vic’s medical costs were R3.2m.  ICU Pharmacy accounts ran into the hundreds of thousands of rands!

With terminal illness come HUGE medical bills.  As long as there is money the doctors will operate and treat, hospitals will admit and treat…   Colin and Vic eventually lost their home due to medical bills and Danie and I started taking additional bonds against our property.

When faced with the news that a family member has been diagnosed with a terminal illness, many people worry about what they should say and do. They want to help, but often don’t because they are afraid they will say or do something that will further upset the loved one.

Terminally ill persons have the same physical, emotional, and spiritual needs as everyone else. What they need most of all is to be cared about, not just cared for.

Someone said that they do not see Vic anymore as they had already said their goodbyes…they could not handle the emotional trauma of going through the goodbyes time and time again.  In their lives Vic no longer lives….

When the time comes I wish I could have a “by invite only” funeral for Vic.  If you cannot care about Vic whilst she is alive why on earth would you want to attend her funeral?  It has been 10 years and Image

Physical Care is certainly the most difficult part of the dying person’s journey as far as I am concerned.  The control of acute and chronic pain is the biggest challenge that we face.  Medication every four hours is a challenge.  The days are fine but the nights – well that’s a different matter.  It is easier to stay awake until 03:00 and then go to sleep.  Danie or the boys are up by 07:00 so I sleep in.  Getting enough pain medication prescribed is the BIGGEST challenge of all.  Vic’s medical is exhausted within the first two months of the year and thereafter is a nightmare!

The other issues that we have to contend with is constipation, nausea and weakness.   Often Vic is too weak to get out of bed on her own and needs help to get to the bathroom and back.  Showering and shaving her legs is a challenge.  Almost the biggest challenge is Vic’s hair!  Vic has a thick bunch of hair and she will not wash and towel dry it!  Her hair must be blow dried!

Vic went through many stages –  anger, sadness, anxiety, and fear.  It is strange that at first we all go into denial.  Even now I still do.  Vic said earlier this week:  ” Mommy, I am so happy I will be around for Jared’s confirmation.  I know I won’t be at Jon-Daniel’s confirmation”  I immediately retaliated and said “Of course you will be baby.  You just have to keep fighting”   Why did I feel compelled to make an empty promise?

Vic’s emotions are real.  Touch is comforting to her.  She loves being hugged, touched, kissed.  She appreciates the truth.

If it had not been for Vic’s positive attitude towards life and determination to bring up her boys herself, she would have died many years ago.

Vic is now tired and ready to die.

Vic regrets not going to Italy.  She desperately wants to go to Chaka’s Rock one more time.  She wants to see her boys grow up.  She wants to make a speech at their 21st birthdays!

As a family, there is nothing unsaid.  We love Vic and she knows it.  She will continue to live even after she stopped breathing.  We will honor her wishes for the boys and keep her memory alive.  Vic may stop breathing one day but she will always live in our hearts.