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.
It was with fear and trepidation that I gave Vic her medication last night. Esther, (Vic’s big sister and a pharmacist) asked me whether the Jurnista replaced the morphine and was just a little surprised that it was in addition to the Morphine, Neurontin, Degrenol and Stilpayne. My research really scared me yet strangely I was at peace.
By 24:00 Vic felt no difference and her pain was at a solid 9. By 02:00 her pain was a little easier. Vic had a fairly good night. But she is having a very good day!!! The Jurnista appears to be working! Vic rested well this morning and went out for coffee with Tracey! How absolutely amazing is that!
Last Sunday, Frik, a Christian colleague phoned me after church and asked me to give Vic a message. “Please tell Vicky that God wants me to tell her that He loves her”… She was too ill and I only told her on Tuesday. I missed the Tuesday Pain Clinic appointment… On Thursday the Pain Clinic doctor is a wonderful, compassionate, young Muslim man who showed mercy and compassion …
My faith has often wavered over the past ten years. Not in God but in a God of Mercy. The actions of the church, Christians, doctors, nursing staff, radiologists, Hospice, family and friends, mostly reflected a cold, loveless society that does not begin to understand what compassion means
When we first received Vic’s death sentence there was an absolute outpouring of love. But I suppose she did not die soon enough and people slowly and discreetly disappeared out of our lives. My blog is three months old and most of you too may get tired of the waiting game and stop reading it and disappear into cyberspace. Well, this time you cannot hurt us because you are faceless.
I am digressing. This week we were reminded that there are still angels around. A compassionate man who prays for pain relief of a young woman he has never met, a doctor who prescribes palliative care medication… The Jurnista could hasten Vic’s imminent demise but I don’t care. I would rather she spend one pain free day with her boys and family than a lifetime in the pain that she lives with.
Many people have left wonderful caring messages on my email, comments on the blog and Facebook. Thank you! It really does mean a lot to us. Vic does not read my blog neither do her boys. But Vic has truly appreciated the contact some of her old school friends have made. As I said before, dying is a lonely business!
But today we celebrate the wonderful new drug! I thank God for sending angels along our way. I thank God for His message through Frik, when I was at the lowest low in my life!! I thank God for Dr Jaffer Hussain! I thank God for your messages of encouragement and above all I thank God for Vic’s good day! Thank you, thank you, thank you God! Even if it is only one good day!
I woke up early this morning with a very heavy heart. It was Pain Clinic Day again. There is no appointment system – it operates on a first come first serve basis. Wonder above all wonders no traffic delays… I was first to arrive!!!
The amazing thing is that one of Vic’s ICU doctors ran the Pain Clinic today. He immediately recognised me and we spent an hour discussing Vic. He looked at her X-rays and was mortified by the fracture. He was so sympathetic. Over the past 5 years he has often been part of the ICU team fighting for her life. He is well aware of the prognosis and confirmed that the arm would be terribly painful and that there was no chance of it mending. He knows exactly what her little body has been subjected to over the years.
We will try an additional tablet, Jurnista, which apparently works on two different pain receptors. “Hydromorphone controlled-release belongs to the family of medications known as opioid analgesics (narcotic pain relievers). It is used to treat chronic severe pain. Hydromorphone works on the brain to increase the ability to tolerate pain. Hydromorphone controlled-release works by gradually releasing the medication into the body to help control pain that requires the prolonged or continuous use of an opioid pain killer.”
The side effects seem severe. But he double checked with the head of the department so I am sure they know what they are doing! I know that I will not have a peaceful night’s sleep at all! But so far so good – it is a slow release tablet so no effect at all yet. Oh, I forgot – it is highly addictive!
I am cautiously optimistic! Just a little reprieve would be great!
Poor Jared. Just when we thought he has recovered so well from the Nissin Repair, chest pain strikes again! (Nissen fundoplication is a surgical procedure to treat gastroesophageal reflux disease (GERD) and hiatus hernia. http://en.wikipedia.org.)
Jared was born with a reflux problem. He was the best projectile vomitter ever! As he grew older he stopped vomiting (in public) and never complained. He then started chewing Rennies. No matter who he went shopping with, he always came back with a pack of Rennies. Obviously nobody reconciled his Rennies intake… Until he developed chest pains!
Long story short is that after six months of treatment, the decision was made to do the Nissen repair. I may have blogged how well Jared did post-operatively, how brave he was and how wonderfully he recovered. So it came as quite a shock when I received a call from school yesterday asking me to pick Jared up as he had severe chest pains again…
We spent the afternoon at the doctors. Chest X-Ray, ECG and then a CT scan. CT showed up several kidney stones… Average size 6.6mm. The chest pain was caused by something called Costochondritis. Costochondritis is inflammation of the junctions where the upper ribs join with the cartilage that holds them to the breastbone or sternum.
Today Jared went for blood tests. Once the results are back we will start seeing some specialists to resolve the kidney stone and calcium build-up problem. The Dr suspects Jared has either an autoimmune and/or connective tissue problem.
I was thinking today, that if we only have one life, how come it is so crappy? Why can I not be the ill one? I have made many mistakes in my life and stepped on a couple of toes in my career. People love me or hate me. Vic has never deliberately gone out to hurt anyone. She was born with this dreadful disease. And now my beautiful Jared… I could not bear going through this again with him. He has such a pure heart. The scariest thing is that he has witnessed his mother’s struggle and steady decline over the years.
There are times that Vic cannot remember – the times that she was in ICU, ventilated, sedated, critically ill – all of this the boys lived. Vic does not know what tomorrow holds but if Jared is diagnosed with OI he will know exactly what lies ahead of him. I see the helplessness in his eyes when he looks at her. I hear his frustration with her battle… Please, if there is a God of Mercy, let Jared be spared this.
Tonight I am not in a happy place. I spoke to the UK kids and feel content that they are settled and doing well. Spoke to the little ones but the longing is worse than ever. Chloe graduates tomorrow. I am not there to share this milestone in her life.
Life sucks.
Some people take their time and linger. Some people get it over with quickly. For some dying is hard work. But all of us are heading towards the same destination. Passing through our physical stages of dying. Into death…
“Hope provides us with the psychological and emotional energy to accomplish what those without hope often considers the impossible.”
The journey of dying has many stages – I have heard it called check-in stations. I know that some people bypass some of the stages/stations. Some people take their time and linger. Some people die quickly and easily, like my beloved Dad and best friend Marlene.
My dad suffered with a terminal illness called Alzheimer’s. It was dreadful seeing that proud, dignified man’s brain slowly degenerate. He lived with us for the last 18 months of his life.
After a year we decided to employ a full-time caregiver to keep Dad company and to assist him with daily tasks such as showering etc. On the 28th of April we had a wonderful day with all the kids – our annual Easter Egg Hunt. Dad played with the little ones and at the end of the afternoon abruptly got up and walked off. We let him be – he got tired of people and confused after a while.
An hour and a half later we walked one of the kids to their car and found Dad on the little bridge outside his flat. He had fallen and was unable to get up by himself. I remember thinking that I would have to move the bridge. Obviously my Dad’s balance was deteriorating. I also remember thinking that it was such a pity about the bridge – it was such a pretty feature in the garden…
On the 2nd of May 2011 Dad’s eyes are clouded over and he slept all day. He recognized no-one and his legs no longer received the walk commands… Every time he got out of bed he would fall. I was sleeping on the second bed in his room so I could hear him get up. I would put my arm across his chest so I would wake up when he moved.
On the 4th of May 2011 Vic was admitted to hospital for operation number 80. On the 6th of May Vic spent 6.5 hours in theatre with her colostomy reversal. The first time ever Brendon Bebington did not use the dreaded words – “I am cautiously optimistic” However in true Vic form Vic went back into theatre on the 7th of May for another 3 .5 hour procedure. Richard, the anesthetist, inserted the needle into the wrong vein when they mainlined her… Vic had asked him to try and avoid getting her hair all elastoplasted. Even the pain of the Elastoplast in her neck is too much post-op. Apparently it is not a common error but it happens. With Vic’s blood clotting problems is was a dangerous little exercise getting the needle out of the artery…
By the 9th of May I was absolutely exhausted. I had been unable to spend any time with the boys. And they really needed me. Between Vic/hospital/work/ Dad and the boys I was absolutely torn.
That night I did not hear my Dad get up during the night. He fell again. We managed to get my Dad back into bed but at 12:30 the next day Dad fell again and this time he was hurt badly. Dad was admitted to hospital and due to the need for 24/7 care was admitted to ICU. Whilst Dad was being admitted I had a phone call from my best friend Marlene’s mother saying that she found Marlene in her room, she thought Marlene was dead. Thank God Danie was with me and he stayed with Dad when I rushed off to Marlene’s.
My dearest friend was dead. She had simply had a heart attack and died! I had tried to phone her from the hospital to tell her about my Dad whilst she was dying herself!
The next day I met with the medical team. Dad appeared to be in a coma. The physician said that Dad had pneumonia. The Neurologist confirmed that Dad was in the Severe advanced stage of Alzheimers. The Specialist surgeon wanted to operate on my Dad’s aneurysm.
I made the heart wrenching decision that there would be no aggressive treatment of the pneumonia. There would be no operation. The Physician agreed with my decision.
On the 13th it was my dearest Marlene’s funeral. The next day I discharged my Dad from the hospital and brought him home. We had received the Hospice bed and Hospice had evaluated and accepted dad as a case. On the 16th Dad had a lucid visit with Ester and Yuri and Hospice started administering Morphine, Dormicum and Serenace subcutaneously. Dad battled to swallow and I was pretty distressed about his liquid and food intake. Dad’s core body temp had dropped to 34.5 degrees C. Hospice said that Dad’s body had started shutting down and not to worry about his food or liquid intake. On the 17th my beautiful father cried during a lucid moment because he could not articulate his thoughts and he was mumbling …
I played his favorite classical music and tried to keep him comfortable. I treasured every moment that I sat and listened to his labored breathing but I was at peace. There was nothing unsaid between the two of us. Yet I was so sad…I did not expect it to happen that soon.
On the 20th of May my Dad lost his battle against Alzheimers when he forgot how to breathe. Twenty three days after his first fall…
Why the detailed timeline in this post?
Some people take their time and linger. Some people get it over with quickly. For some dying is hard work. But all of us are heading towards the same destination. Passing through our physical stages of dying. Into death…
For a long time Marlene wanted to die. She did her best and yet only when it was her time did she go. Not on her timing, terms or conditions. But when her time came it was quick and hopefully not too painful. Marlene wasn’t ill. She was sick of life!
If I could ask my dad I think he would have been surprised at how quickly he died. Do I regret my decision to not allow aggressive treatment? No! I hope that if ever I am in the situation that my Dad was in someone would afford me the mercy to allow nature to take it course!
Vic has lingered for 10 years… It is really hard work for her…
“Too often we underestimate the power of a touch, a smile, a kind word, a listening ear, an honest compliment, or the smallest act of caring, all of which have the potential to turn a life around.” Leo Buscaglia
I am disgustingly healthy! I do not get headaches, toe-aches, tummy aches, ear aches or any aches or pains. Every five years or so I get the flu and am totally unable to deal with the discomfort or pain of flu…I will stay in bed and when I hear Danie walking up the stairs to our room I will actually start groaning. It is involuntary. I am a ninny. My family joke with my non-existant pain threshold. Yet I see the doctor once a year for an annual check-up as I did last week.
Liver, lungs, kidneys perfect according to my blood tests. Slightly elevated cholesterol count. Doctor says I am in near perfect health. So how do I understand my child’s pain and discomfort? I don’t! If you were born blind how could you ever understand or appreciate color?
There is a very brave young lady called Katie Mitchell, who suffers from Marfan’s Syndrome. http://connectivetissuedisorders.wordpress.com Katie gives me an insight into pain… She articulates her feelings beautifully. Katie lives, breathes and understands pain… Katie has become my window into Vic’s painful journey…Katie re-posted a blog on pain and I found it so enlightening. I will actually print the document and discuss it with the family.
Katie writes in red and my comments are in black:
Tips for dealing with people in pain:
1. People with chronic pain seem unreliable (we can’t count on ourselves). When feeling better we promise things (and mean it); when in serious pain, we may not even show up. Vic is always trying to go to breakfast with Angela, lunch with Mrs Cramp and coffee with Tracey. Vic very seldom is able to stick to a commitment. It fills her with remorse. She desperately wants some normality in her life. Some semblance of a social life. Pain and ill-health prevent it!
2. An action or situation may result in pain several hours later, or even the next day. Delayed pain is confusing to people who have never experienced it. Oh this I truly relate to…Vic sitting in the sun and crashing later, Vic trying to participate in a family barbecue and spending a week in bed to recover… Every action has a painful consequence! As a family we dread Vic’s brave (but stupid as far as we are concerned) attempts of participating in life. As a family we become angry, frustrated and scared when Vic tries to “live”!
3. Pain can inhibit listening and other communication skills. It’s like having someone shouting at you, or trying to talk with a fire alarm going off in the room. The effect of pain on the mind can seem like attention deficit disorder. So you may have to repeat a request, or write things down for a person with chronic pain. Don’t take it personally, or think that they are stupid. I never realized or appreciated this aspect of pain. I often thought to myself Vic must be doped up, disinterested… As a family we were not aware of this aspect of pain. Vic at times seems totally disinterested in the boys, the family, in life…
4. The senses can overload while in pain. For example, noises that wouldn’t normally bother you, seem too much. Vic battles with too much movement or noise. She becomes very irritated.
5. Patience may seem short. We can’t wait in a long line; can’t wait for a long drawn out conversation. Absolutely!! If Vic wants something she wants it now!
6. Don’t always ask “how are you” unless you are genuinely prepared to listen it just points attention inward. Sometimes I am too scared to ask. Some day’s I say “Oh, you are looking so great today” and Vic will reply “Oh good…” and I know that she is thinking “Tell my body! I am feeling like death”
7. Pain can sometimes trigger psychological disabilities (usually very temporary). When in pain, a small task, like hanging out the laundry, can seem like a huge wall, too high to climb over. An hour later the same job may be quite OK. It is sane to be depressed occasionally when you hurt. Tonight Vic could not rub the hand cream into her little hands. She could not pull a brush through her hair…
8. Pain can come on fairly quickly and unexpectedly. Pain sometimes abates after a short rest. Chronic pain people appear to arrive and fade unpredictably to others. I think Vic is past this stage. Her pain is debilitating relentless and never-ending!
9. Knowing where a refuge is, such as a couch, a bed, or comfortable chair, is as important as knowing where a bathroom is. A visit is much more enjoyable if the chronic pain person knows there is a refuge if needed. A person with chronic pain may not want to go anywhere that has no refuge (e.g. no place to sit or lie down). We are past the visiting stage.
10. Small acts of kindness can seem like huge acts of mercy to a person in pain. Your offer of a pillow or a cup of tea can be a really big thing to a person who is feeling temporarily helpless in the face of encroaching pain. Every small action elicits a “Thank you Mommy” Reuben actually remarked that in the past Vic took everything that I did for her for granted. At this stage of her life Vic drives me absolutely mad with all the “Thank-You’s”
11. Not all pain is easy to locate or describe. Sometimes there is a body-wide feeling of discomfort, with hard to describe pains in the entire back, or in both legs, but not in one particular spot you can point to. Our vocabulary for pain is very limited, compared to the body’s ability to feel varieties of discomfort. Vic’s pain is well-defined but at times she has referred pain.
12. We may not have a good “reason” for the pain. Medical science is still limited in its understanding of pain. Many people have pain that is not yet classified by doctors as an officially recognized “disease”. That does not reduce the pain, – it only reduces our ability to give it a label, and to have you believe us. We do not understand pain. I never have pain. I cannot imagine not being able to walk, run, work, function, drive, live due to debilitating pain. I groan from flu-pain…I don’t know how it feels to have a frozen abdomen, fractured vertebrae, migraines from skeletal collapse, chronic and unrelenting tissue pain…. There are times that I think surely it cannot be that bad? I don’t understand Vic screaming with pain but I KNOW her pain is real!!!
Author Unknown” http://connectivetissuedisorders.wordpress.com/2011/05/20/tips-for-dealing-with-people-in-pain/
In addition to the above I would like to add some of my own observations…
13. Pain makes people emotionally over-sensitive. Vic often misinterprets what we say. She takes things very personally! She is almost jealous of the boys and my relationship. She feels excluded from so many aspects of our lives. Last week Vic said “You are the fun-Oumie. I don’t make my boys laugh”… She is very sensitive as to who the boys ask permission to do things or go places… It is okay because she is scared of losing everything that is precious and dear to her.
14. Pain makes people selfish. This is a harsh statement. When your body is engulfed in pain it must be very difficult to see reason and to wait. It must be difficult not to lash out at the world. To not stop and think of the effect that your illness has on your family and friends.
15. Chronic pain and depression are closely linked. Chronic pain almost always leads to depression: Why? Just imagine a life consisting of dreadful, mind-blowing, unrelenting pain? Imagine not having anything to look forward to… We try to set little goals for Vic.
16. Fatigue is a definite factor.
Whether it is the pain medication or the emotional strain of coping with the pain, Vic is chronically and permanently tired. We leave her to sleep. We are far happier seeing her in bed than seeing her battle to walk, sit or participate…It stresses us that she gets up when she is so tired. Vic falls asleep in a chair, the bath, the car, on her feet… We are at loggerheads with Vic in this regard… We want what is best for her…
17. Addiction:- “Patients often fear addiction. Patients with chronic pain do not and cannot get addicted to morphine. This is proved clinically by seeing patients whose pain is abolished (with a nerve block, for example) when even high doses of morphine used for several months can be stopped immediately with no withdrawal effects. Patients who are terminally ill still often fear that they may become addicted to morphine. They and their families can be reassured. This cannot happen when morphine is correctly used to control their pain. http://www.hospiceworld.org/book/morphine.htm“
The amount of medication that Vic takes is a source of great embarrassment to her. Her biggest fear is that people will think of her as a “drug addict”. This often prevents her from taking adequate medication. Do not even jokingly call someone who is chronically ill a drug addict…You have no idea what you are talking about! Quite frankly I don’t care whether Vic is an addict or not…as long as she has some quality of breathing or life as she now knows it.
I wish I could research exotic vacation spots rather than “Tip’s for dealing with people with pain” But this is part of our journey…
It is 20:00 and Vic has been fed, changed, powdered and medicated. She screamed in 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.
Vic's Final Journey 