Hero to Zero – one year ago….


 A year ago I posted this… I remember Vic’s screams of pain, the agony on her precious face, the raw fear in her eyes.

Vic basking in the winter sun!

Sunday was an amazing day.  Lorraine, my sister, came to visit and it was great having adult company that discussed more than pain control, bowel movements and vomiting.

Lorraine moved a chair into the sun for Vic.  Vic sat basking in the winter sun sipping lots of coffee.  In true form, Vic on her occasional good day, pulled the dam from under the duck.  She was like a little jack-in-the-box.  Needless to say, I was a spoil sport as I kept begging her to slow down…She did at 15:00 when she literally crashed.

Vic sobbed from pain and my poor sister wasreduced to tears.  She is not used to facing the raw pain of a terminally ill patient who breaks through her pain threshold!

Vic dozed on and off  but kept waking from the pain.  Maybe she took some extra painmeds because she seemed disoriented?  Both Danie and Lorraine expressed their concerns that she seemed to have totally lost track of time and events…

Sunday afternoon the boys came home after spending the weekend with their Dad.  Danie took Jared and Kirsten, (Jared’s girlfriend), to church.  Vic kept trying to get out of bed.  She is so darn stubborn.  She hardly ate any dinner so I gave her anti-nausea tablets and only half her normal pain medication.  She kept getting out of bed.  She would just not stay in bed.

I got so angry with her that I said I would fetch Jared from church.  I needed to remove myself from the situation.  Lorraine said “let me stay with Vic” and I said “No!  Come with me”

Minutes after dropping Kirsten off at home I had a phone call from Danie telling me that Vic had a bad fall…

At home she was lying in a crumpled little heap full of blood and screaming from pain.  Jon-Daniel, bless his heart, was lying next to her on the bed trying to comfort her.  Vic went hysterical when I said I was phoning an ambulance.

“No Mommy, No!!! No ambulance!  No ambulance”

We agreed that we would try to get her to hospital in my car.  Jared half carried her out to the car and then the drama began.  We could not swing her legs into the car!  She was screaming with agony.

I phoned the ambulance service but when they arrived it was obvious that they could not lift her onto the spine board and/or bed.  Eventually we repositioned Vic in the car.  Jared sat behind her and cradled her in his arms.  The ambulance escorted us to the hospital.

At the hospital it took at least 15 minutes before the Trauma and Medics staff decided how to move her into the Trauma Dept.  Vic screamed and screamed with pain!  From 21.30 to 03:00 they x-rayed and scanned Vic.  Most of the x-rays were done in the Trauma section.  Vic’s pupils were very dilated and she was VERY confused so they also ran a CT Scan.

Vic in ER

If I was ever given the opportunity to erase 30 minutes from my life it would be the 30 minutes that it took to move Vic from the ER bed onto the scanning table and back, straightening her legs and forcing her to lie on her back…she screamed and cried “Mommy help me, Mommy!!!  Mommy!!  Mommy help me!!!”

The diagnosis – “impacted fracture of proximal metaphysis of right humerus”.  Vic was admitted to the orthopedic ward and scheduled for surgery today.  The orthopod decided that she is too frail and the risk of the sepsis spreading from the spine and abdomen to the arm,  too great, for him to “pin” the arm.  So Vic’s arm is in a sling and will mend, albeit crooked, eventually on it’s own.  She also has a displaced fracture of the fibula, posterior malleolus, (I believe these are all ankle fractures and Lanie, a physiotherapist says if she had to choose a fracture it would be these fractures), an avusion fracture of the calcaneus and several vertebrae …The spine…well what is to do?  Pain control, bed rest…  Oh, did I mention that the staff had mobilized Vic and she had WALKED on her broken ankle because no-one read the X-ray reports???  I only picked it up when I read the reports this afternoon!!!!  I had to report it to the nursing staff!

I would like to point out that this is in a Private Hospital….can you imagine what happens in Government Hospitals?

I am so angry with myself.  This happened because I got angry with Vic.  I should have stayed with her and not reneged my Caregiving duty.  I should have had been there to bulldoze my stubborn child into remaining in bed.  My temper has caused Vic endless, unbearable pain.  Who knows how long it will take her to recover from this trauma…if she indeed ever recovers from this!  I will never forgive myself for this!

Well with the bad comes the good as well.  We have dreaded Jared’s surgery on Wednesday as we know Vic would have insisted on trying to sit at hospital all day.  Actually, the whole week!  Problem solved.  She is too sore to move… And will more than likely still be in hospital on Wednesday.

The nurses just changed her bed linen and she screamed with pain!  How are we going to take care of Vic at home?  My sister offered to come through but two  qualified nursing staff could not move her without causing major distress.  She also cannot walk and needs to be “bed-cared” for. …bed baths etc, etc, etc

For the first time, ever, I am at a loss.  I am so tired.  I don’t know what to do anymore.

Alberton-20120706-00661

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Fracture 39, 40 and 41…


Vic with her right leg in plaster-of-paris
Vic with her right leg in plaster-of-paris

Two weeks after our arrival in Johannesburg we celebrated Vic’s 3rd birthday.  Tienie drove my car up and was able to be with us for Vic’s birthday.   By her birthday Vic had 38 fractures.

The day of Vic’s birthday Tienie and I went for a drive looking for an ice-cream parlour as a birthday treat for her.  Vic was sitting on the backseat.  Cars did not have safety belts in 1977… a dog ran across the road, and Tienie swerved out to avoid running it over….. Vic fell off the back seat.

I immediately knew her little arm was broken.

We drove to the nearest hospital.  It was Vic’s first visit to an Emergency Room in Johannesburg.  There was a long queue of patients waiting to be seen.  I completed the paperwork and we sat down for the long wait.

Vic being a toddler we got moved to the front of the queue.  A tall, tired looking doctor took down Vic’s medical history.

“Treatment?”  he asked…

I remember thinking “Duh….. You know there is no treatment.”  But, then a spark of hope flamed up and I asked “Do you know of treatment for Osteogenesis Imperfecta?”

“No” he said

“Vicky is having experimental homeopathic treatment.  The physician treating her is Professor Majorkenis” I said

He looked at me and took out a red pen from his pocket.  In huge red letters he wrote “Homeopathic treatment” across the page.  He drew two lines under the words…

In a terse voice he instructed the nurse to take us through to X-rays.  There was no radiologist on duty, and we had to wait for the call-out radiologist to arrive.  I eventually went through to the ER and asked the doctor whether Vic could have something for the pain.  It was 2.5 hours after the event, and she was crying from the pain.

“She cannot have anything for pain.  She may have to go to the theatre.  But then you know that don’t you?” he asked in a very sarcastic tone of voice!

I went back to X-rays seething but knowing that what he said was true.  If the bone had dislocated Vic would have to go to theatre.

By the time I got back to X-rays the radiologist had arrived and was busy setting up the machine.  Vic’s cries of pain are still etched into my heart and brain when her little arm was positioned on the table.  Tears ran down my cheeks whilst I kept telling her that if she kept still it would be over soon.

The X-ray showed 3 clean fractures.  No surgery would be necessary.

We went down to the ER, and the doctor started applying the plaster-of-paris to Vic’s arm.  She was sobbing with pain.

I absolutely lost it.

“If you have a problem with the fact that my child is having homeopathic treatment you take it out on me. “

He just fixed his tired eyes on me and said nothing.

“Do you know what it feels like when your child is sentenced to death and there is no appeal system?  Western traditional doctors, like you, have offered us no hope what so ever!  This Homeopath is prepared to TRY.  That is a hell of a lot more than what doctors like you are prepared to do! ”

His eyes were big and he had stopped working on Vic’s arm by then.

“Now, if you have a problem treating my child with the care and dignity that she deserves I suggest you get someone else in here to take care of her!”

He drew up a syringe with some pain medication and said “This will just sting a little, but it will help for the pain…”

He gave it a couple of minutes and then completed the plaster-of-paris process.

Without a word of apology he wrote a prescription for pain medication.  He curtly said “Take her to her orthopod in three weeks” and walked out of the cubicle…

I lodged a formal complaint against him the following day, but nothing ever came of it.

Was I surprised?  Hell no!  Homeopathic or alternative medicine was satanic in 1977 in South Africa!  We would go to hell for it any way…

On Vic’s 3rd birthday her fracture count went up to 41…

Addison’s and Vic’s Brazilian Blow-Dry 12.7.2012


ImageWe decided that we needed a 2nd opinion on Vic’s arm.  We had a 10:45 orthopod appointment with her own Orthopod!  (She was treated by the trauma orthopaedic surgeon in hospital)

 Well, the orthopedic appointment did not go well at all.  Firstly, her original orthopaedic guy would not look at her arm.  He is not the treating doctor and it is unethical.  Blah, blah, blah.  If I had gotten a 2nd opinion on her back Vic may have been spared 10 years of absolute hell!!!!!!!!

 Eventually he looked at her knee, which is hurting like hell, and I slipped the humerus X-Rays into the other X-Rays…

 We sometimes forget how every tablet Vic takes, affects something else.  Vic was diagnosed with Addison’s two or three years ago…

 “Addison’s disease

From Wikipedia, the free encyclopaedia

Addison’s disease (also chronic adrenal insufficiencyhypocortisolism, and hypoadrenalism) is a rare, chronic endocrine disorder in which the adrenal glands do not produce sufficient steroid hormones(glucocorticoids and often mineralocorticoids). It is characterised by a number of relatively nonspecific symptoms, such as abdominal pain and weakness, but under certain circumstances, these may progress to Addisonian crisis, a severe illness which may include very low blood pressure and coma.

The condition arises from problems with the adrenal gland itself, a state referred to as “primary adrenal insufficiency”, and can be caused by damage by the body’s own immune system, certain infections or various rarer causes. Addison’s disease is also known as chronic primary adrenocortical insufficiency, to distinguish it from acute primary adrenocortical insufficiency, most often caused by Waterhouse-Friderichsen syndrome. “

So, part of Vic’s medicinal regime is Cortisone twice per day.  One of the side effects of cortisone is  “osteoporosis or other changes in bone which can result in an increased chance of fractures due to brittleness or softening of the bone”.  Hello???  Osteogenesis Imperfecta + Addison’s + cortisone = disaster!!!

Yesterday, we were coldly and clinically informed by the Orthopaedic Surgeon that there was no way that the bone would ever mend properly.  The humerus cannot be pinned due to the danger of sepsis and the fracture is complicated by severe comminution and poor bone quality.  The surgeon said that when her arm is X-rayed in 3 weeks or even in 6 weeks, the fracture will progressively look worse until eventually there will be some callus formation.  Another dismal prognosis!  I wonder if there will be nerve damage and whether she will ever regain full use of her arm.  From the sounds of it she will only be able to come out of the cast and sling in approximately three months’ time.

Today I took Vic to the hairdresser and she had a Brazilian blow-dry treatment.  Now, for those of you who are as ignorant as I was, this is a “hair straightening” process.  Four hours!!  Shame Vic was sleeping in the chair…poor baby!  She is exhausted but it will make her life so much easier for many months ahead.  Vic will not wash and leave her hair – it has to be sleek…Now with this Brazilian blow-dry thing we can wash her hair and leave it!  Bliss!! 

I never saw my late Mom not immaculately dressed with her hair beautifully done.  No matter how ill she was, Mom went to the hairdresser three times a week.  Her nails were always immaculate and Mom would get very annoyed with me if I wasn’t wearing make-up and had my hair in a ponytail.  “Always the lady” was her motto.  As it is Vic’s.  I find it absolutely amazing that she insists on getting dressed most days.  Well, certainly before the boys get home from school.  She does not want the boys to see her in pyjamas. When we wash her hair it must be blow dried…She will not scrunch it or put it up in a ponytail, plait or pin…Vic’s hair has to be sleek…No matter how ill she is.

Her little body is so swollen from the cortisone.  Her face looks like a little chipmunk’s!  It happens from time to time.  What is worrying is that Vic’s blood pressure is steadily increasing.  Addison’s symptoms include low blood pressure…so why is Vic all of a sudden developing high blood pressure?  And Madam will not see a doctor!  What to do?Image

Vic does look so beautiful after her hairdressing marathon.  She is passed out and I know it will take her a week to recover from this outing.  But, it is well worth it!