Dèjè vu


Today at 16:20 we saw the doctor regarding the results of Jared’s blood tests.

When I saw the pain in Vic’s eyes it propelled me back 35 years ago when she was diagnosed.  I saw the same pain in Tienie’s eyes when Vic was diagnosed with Osteogenesis Imperfecta.  Well not exactly that day, but the day his mother told him that his paternal father had died at the age of 35 from an undiagnosed disease that had OI symptoms…

When Vic decided at the age of 21 to get married Tienie and I really weren’t happy.  We felt that she was too young and the way forward with OI would only get more difficult.  I spent a lot of time talking to Vicky and Colin about OI and the fact that they could never have children.  Vic wanted to get married and those of you that know her will know that once she has made up her mind nothing can or will stop her.

The day of the wedding I sobbed my heart out.  She looked so beautiful!!  I had a premonition of impending disaster… but then again most mothers feel that way when their daughters get married… Vic was just so young and had such a poor prognosis.  I had been a child bride and knew how difficult it was.

Vicky fell pregnant six weeks after her wedding.  The Sunday night they came to tell us I sobbed and sobbed!!  I immediately made an appointment for Vicky and Colin to see the Wits Dept. of Genetics on the Wednesday.  I went with and until today remember the feeling of doom descend on me when the genealogist strongly advised Vic to have a legal abortion.  The baby had more than 50% chance of being born with OI or at best would be a carrier or the OI gene.

Vicky refused flat out to have an abortion.  She said the baby was straight from heaven.

We went to see the gynaecologist and I saw the baby’s heartbeat.  Two weeks later Vic was in hospital with a threatening miscarriage.  She fought for her baby through-out her pregnancy.  I fought with her because of her baby…  I was fighting for Vic’s life.

Tienie was so angry because Vic was pregnant that he refused to speak to her for months.  I went and saw him at his office at cried.  I begged him to put aside his anger and support her – we may lose her in childbirth… Tienie looked at me and said: “We all grieve in our own way.  I wish I could cry…)

Throughout the pregnancy I was petrified that Vic would give birth to an OI baby.  On Christmas Day Vic went into labor… On the morning of the 26th Vic had a cesarean section and gave birth to a healthy, albeit ugly, little son.  When they ran down the theatre passage with Jared in an incubator I caught a brief glimpse of him.  A rush of love, like I have never experienced before, overcome me.  I cried from the wave of love.  Colin stood crying next to me and we just hugged and clung to one another…

As a baby Jared was very ill.  He spent a lot of time in hospital.  At one stage the doctors thought he was going to die – he battled viral infections until he was about 5.  At the age of 5 Jared developed a sugar problem whilst Vic was ventilated https://tersiaburger.com/2012/05/28/22-2-2002-to-28-5-2012/Osteogenesis Imperfecta … 22.2.2002 to 28.5.2012.  Doctors said it was stress related.

At nursery school Jared started injuring ligaments, twisting ankles.  It got worse as he tried to participate in sport when he started fracturing ankles.  At age 13 he was diagnosed as diabetic.  On 27th of July Jared had a Nissin repair https://tersiaburger.com/2012/06/30/a-mothers-love-for-her-sons/ and https://tersiaburger.com/2012/06/28/a-vicious-cycle-of-nerves-2/.

Last week Jared developed chest pains again.  ECG, CT scan, Blood tests and X-rays…Result of CT showed numerous kidney stones.  Results of the bloods read as follows “Low positive ANA titres are often non-specific and may be seen in elderly individuals, following viral infections or tissue damage, or in patients with malignancies.  It may also be seen in normal individuals, relatives of patients with connective tissue diseases, as an early marker in individuals that may later develop a connective tissue disease and in association with other auto-immune diseases, e.g. rheumatoid arthritis”  We will firstly see a Urologist to resolve the kidney stone issue and then a Physician.  Maybe it is nothing to be worried about.

When I got home today Vic asked me what was wrong.  I tried to lie to her but she saw right through me.  When I showed her the blood test results she just sobbed.  I saw the pain that Tienie felt all the years of her life, the guilt of knowing that a faulty gene has passed from parent to child…

Jared is strong and resilient.  I have faith that he will get through this trying time stronger than before.  I am confident that it will not be too serious.

I wish with every fiber in my body that Jared could have a sterilization operation that this curse can come to an end.  One way or another I am going to break this child’s heart when I have the “Please do not consider procreation until there is a cure or a way of isolating the faulty gene…”  We have touched on it but I am afraid it will have to be a serious chat.

My heart breaks for my child.  I wish she could go through this phase of her journey without this pain and worry… I wish that I had never said to her “I don’t know if I can go through this again…”  I wish I never heard her say “Mommy do you want me to go to a home?”

I hate my life.  I hate the life my poor child has to endure.  I hate the life that Jared may have to live.

Hero to Zero

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 spoilsport 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 was reduced 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 additional pain meds 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 renaged 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 personnel 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.