Vic finally went to theatre on Saturday evening for an “emergency” operation. The arm was pinned. It is a long story that I will share once Vic is out of ICU.
She is doing well. Pain control as always was a major issue but is now under control again.
I have decided that Jurnista is a wonder drug.
Tomorrow Vic will go back to the ward.
Now we start worrying about the sepsis spreading from the septic spine and abdomen to the virgin arm.
Yesterday we did not see the GP for Vic’s arm – she was just too exhausted to get out of bed.
We arrived at the Urologist at 14:30 and low and behold he is at another practice in a different suburb. The receptionist gets such a big fright because of the size of Jared’s kidney stones that within minutes she is busy arranging theatres for emergency surgery! Eventually I got her to HEAR what I was saying – the kidney stones are not obstructing the urinary tract! A new appointment is scheduled for Jared to see the Urologist on Monday.
We arrive home and the doggie parlor people had not picked up JD for her final pampering session. Anyway she had a better night the previous night and all of a sudden I am doubting my decision about sending her to Doggy Heaven. Maybe this is a sign that it is not her time!
With minutes to spare, just before I add garlic to dinner, my wonderful, caring friend Gillian arrives. (Gill is allergic to garlic and 1000 other things…) Out of the blue with armloads of gifts… A lavender plant and lavender hand cremes for me (to calm me down), rusks for Danie, chocolates for the boys and waterless Magnolia hand sanitizer and linen stray for Vic! How precious is my friend? She read my blog in the morning and decided that I need moral support!
So, egg on my blog face… JD is still walking around, Jared is in high spirits because he is not in theatre and after such a bad start Vic is having a good afternoon. (The Jurnista is working so well!!!)
I was so happy to see my friend!!
Gill and I, over a cup of tea, are sitting discussing Jared’s situation when she asked “Who is his Urologist?” I told her that it is Dr S; he is new in Alberton so we were able to get an appointment quickly… Gillian went white! In her clipped manner of speech she declared “Over my dead body! Do you know what he did to Sandra, (her sister-in-law)? He left the plug in her when he did her bladder repair 6 weeks ago! Sandra nearly died!” Gill then proceeds to tell me that at Sandra’s book club meeting the girls were discussing Sandra’s operation. Naturally the girls wanted to know who the surgeon was and guess who? Yes, Dr S… That apparently triggered two more of the ladies relating their stories of severe sepsis, after urology surgery, to their husbands and the urologist was…. Wait for it….. Dr S!!!!!
There is a God! Imagine if Jared went into theatre yesterday and he was Case No 4 GONE WRONG???
I had just started writing this posting today when the phone rang and guess what? Dr Y’s receptionist was on the line. Dr wants to see Vic… With the speed of lightning I dressed Vic in a tracksuit and sped off to the Doctor’s rooms. The receptionist nearly fainted when she saw Vic’s hand… After a couple of minutes she said if we had not lived close to the consulting rooms she would have told us to come in on Tuesday next week… she did not feel like working late and yesterday she cut down on the number of consults he was doing because she had stuff to do…! Obviously her conscience got the better of her and she told him Vic had phoned. He told her to get hold of Vic to see him today still…
The doctor was shocked when he saw how swollen Vicky’s hand is. He took the cast off and the arm is extremely bruised and very, very sore. We had a long discussion and the decision was made that there is no alternative but to operate. Vic will check into the hospital at 08:00 tomorrow morning and he will operate at 10:00.
I am very concerned about the danger of sepsis. Obviously Vic will go onto strong antibiotics but she already takes antibiotics every day of her life. As a matter of fact she takes antibiotics twice a day, every day of her life. She already has sepsis in the spine and abdomen. I do however realize that there is no other option but to do the arthroplasty surgery.
I am however concerned that a silly little girl can decide how many patients a doctor can see a day not because of his time constraints but her nail appointment at the beauty parlor… I am very concerned that a receptionist can play God and could cost my child her arm. Yesterday it would have been a standard surgery but now it is emergency surgery that has to be performed on a Saturday morning. What a country we live in!
What on earth can make a doctor appoint such an airhead in his practice? We end up with a silly young woman who do not realize the importance of being able to distinguish between a patient needing to see a doctor urgently and her +*%&% nail appointment!
I have tried to Google “humerus + sepsis” but the articles I found were just too complicated for me to understand. So, in faith, I will accompany Vic to hospital and try to get her through the post-op pain and onto the road to recovery. I can only hope that she will not lose too much functionality
I am watching the opening of the 2012 Olympics and am filled with deep sadness for Vic and other people in similar situations to Vic’s. Somebody else’s sons and daughters, the perfect athletes, competing for the top sports awards of the world…. Dreams will be realized or shattered. There will be tears of joy and tears of heartbreak…
Vic has never been able or allowed to do any sport. People of her age are still climbing the ladder to success. Vic has never really worked or climbed the corporate ladder. Vic’s life is over without it ever really started. Vic literally only knows tears of pain and suffering. However if there was an Olympics for pain, suffering and endurance, my child would take gold!!
Vicky Bruce, Champion of Champion in the Pain and Suffering Race! All time winner of Survivor OI.
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.
“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…
“Just because her eyes don’t tear doesn’t mean her heart doesn’t cry. And just because she comes off strong, doesn’t mean there’s nothing wrong.”
My beautiful little Vic is not in a good place emotionally. She feels that she has lost almost everything that is precious to her. She has no future that is not encased in pain, loneliness and further loss. Vic does not have a job to look forward to or even a shopping excursion. There is no hope or prospect of a holiday…not even a visit to a spa, a manicure or a pedicure….
A good day is a day without vomiting too much, some time with the boys, maybe a visit from a sister or friend…
Imagine if that was all there was to your life? Imagine a life like Vic’s…
What goes through her mind? Vic does not wallow in misery all the time. She sleeps…Maybe it is not her body shutting down, maybe it is her mind shutting out her situation.
I sit here tonight and I am planning tomorrow. I have to arrange for our oak tree to be pruned and treated, I have to approve a sighting system for the Middle East, inspect some armored vehicles, organize flights for some staff to Saudi, pick the boys up after school, arrange Jared’s extra maths, sign up at a gym… dentist appointment at 09:30 and take care of my beautiful, sick little girl.
Tomorrow morning Vic will have breakfast and then 39 tablets. The boys will kiss her goodbye and Vic will sleep again. Vic will wake up at 11:00, have coffee and tablets. We will try and get her bathed before the boys get home. Primrose will change her linen and clean her room whilst I am bathing and dressing her. Vic will have lunch and fall asleep again…exhausted from the effort of bathing. The boys may or may not find her awake when they come home. Vic will wake up at 15:00 and chat with the boys for a couple of minutes. She will have coffee and tablets. She will sleep until dinner time… Take 39 tablets….. This is her life! The only deviation is the vomit breaks…sometimes it is a couple of bouts a day and sometimes it is at night. Sometimes it is during the day and the night…Extra baths to clean up and extra linen changes…
Her TV remains on 24/7 but I don’t know whether she has watched a complete program in months.
Vic no longer reads, hopes or lives. Vic no longer joins us in the TV lounge or for dinner. She is too ill to get out of bed.
ger Vic very seldom cries anymore. She is stoic in her lonely journey.
As parents, we try not to wallow in the bad prognosis, but we need to be honest with what the prognosis means and the inevitable outcome. We have to accept reality. We have to guide our family through this. Help the boys to get through this as unscathed as humanly possible! We also have to provide an environment that will be peaceful for Vic and allow her space to come to terms with her life.
The most difficult thing for the family is however to tackle the problems of a very ill child rather than each other.
We love one another and support one another. We will survive this ordeal as a family. We are not perfect but who is? We err in love. But we love deeply and always and forever!
We 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 insufficiency, hypocortisolism, 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?
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!
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 
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.
“Mommy, I’m not afraid of dying. It is the pain that scares me…”
The four most common fears of the terminally ill are:
Death will be painful
Vic the same physical, emotional, and spiritual needs as everyone else. Her biggest fear is however the pain that will be involved in her inevitable death. As distressing as the physical pain, Vic battles constipation, diarrhoea, nausea, vomiting, weakness, loss of dignity and loss of appetite.
The average physician and pharmacist’s concern is addiction! So what? Addiction at this stage of the game is the least of my problems. I do however believe that Vic has become morphine resistant. In hospital last week Pethidine and Perfalgan worked well. This is one of the reasons why it would be great to have Hospice involved in her pain management.
The Pain Clinic is great but they see Vic every couple of months. In the past 10 months I have collected her monthly morphine script on 7 occasions. Thank God they have enough empathy for Vic and enough realisation of her health situation to give me the script. The problem is how much more than 400mg of MST (morphine) twice a day can they prescribe?? Imagine if I had to drag her to the pain Clinic every 28 days…
I honestly believe that family involvement is imperative with someone as ill as Vic as she or any other terminally ill person simply cannot manage these situations alone. Family members closely monitor the effectiveness of pain management. I take Vic’s vitals a minimum of 3 times a day. Her blood pressure and heart rate are clear indicators of where her pain levels are at. I know her body better than any other person, nurse or doctor… I cannot imagine a terminally ill person having to fight for pain medication.
Loss of dignity and control.
Vic desperately wants to participate in ordinary daily activities such as being able to eat with someone; to walk to the bathroom and use it in private, unaided; to talk with a friend; to watch a favourite TV show; to hold her children.
Imagine just for one minute your mother having to help you bath, apply deodorant, dress and undress… Vic has to endure this indignity every day of her life.
Nights are especially poignant. Sleep difficulties abound, not only because of physical pain but also because of fear of sleep, fear of not awakening out of that sleep. One night spent with a dying person could teach all of us, in some measure, the depth of human loneliness, anguish and fear which our own dear ones experience in the brief span of life left to them. Vic sleeps badly at night. She wakes every two hours from pain and then she is too scared to go back to sleep. She refuses to take a sleeping tablet. At night Vic is at her most vulnerable… I am so scared that she will fall at night whilst we are sleeping.
What if Vic is nauseous and chokes in her own vomit sleeping?
That loved ones will be damaged and unable to manage
Vic worries about the family’s ability to cope with her illness and eventual death. When Jared whispered to her “Mommy, I want your face to be the first thing I see when I wake up from the operation” he validated her fears…
Vic often says “You know Mom I worry how Daddy is going to cope with my death…” or “Mommy, do you think the boys will cope without me?” or “Promise me you will go for counselling when it is over…”
No amount of reassurance will comfort her…Vic in time will have to let go. She knows how deeply we love her and what void her passing will leave in all our lives. If you lose a marriage partner it is possible to find another partner and experience love again but if you lose a child or parent…how do you replace a child or parent?
Vic is quite hard on the boys (for their own good I must add). She always says “I am your Mother not your excuse”
If children are involved that they will not be looked after properly.
Vic believes that no-one can ever love the boys the way she does. That is true. I am not a particularly “oochy goochy” person. At times I believe I failed Vic as she has an emotional neediness that scares me. I attended 12 different schools in my life and maybe this is why I battle to form emotional attachments. I don’t have many friends. My family is everything to me.
Vic however often says that she is happy that she moved back home as she has seen how settled the boys are. They are truly happy living with us.
Vic knows that I will care for the boys for the rest of my life. We will guide them and provide for them in every which way. We love the boys with all our hearts.
The question that remains is whether she trusts us enough to let go of this pain filled life where she has lost all control and dignity? I pray that she will…
The focus today was Hospice.
The physician came in today and suggested that once Vic is well enough to be discharged we should have her admitted to a Step-Down facility. A Step-Down facility is an in-between Hospital and Home facility…How wonderful would that be!
Vic refused.
Well, the meeting with Prof Froehlich went quite well, if she keeps to her commitment! She will engage in a discussion with the Pain Clinic’s Social Worker and Home Nursing Representative who deals with Hospice. I also got a letter from the Physician and Orthopod treating Vic at the Union. I will submit these letters to Hospice and if they refuse to treat Vic I will take them to the Constitutional Court. So help me God I will not give up!
Jon-Daniel posted on his BBM status that “No child should ever hear their mother cry from pain”. No child should have to. I know that Sunday evening’s fall (Hero to Zero) will haunt the boys and me forever!
Vic is just a bundle of pain today. Danie sat with her whilst I was at the Pain Clinic. We insisted that the boys go to Gold Reef City as planned. Jared needs to get his mind off his operation and Jon-Daniel needs to be with his big brother. They were traumatized by Vic’s fall. I hope they have a wonderful day!!
Tonight we planned on taking them to dinner as it would the last good meal that Jared will have in many months! Maybe I can find someone to sit with Vic. Jared’s surgery is major. It is to repair an underdeveloped reflux valve, hiatus hernia and creating a junction to tummy due to scar tissue formed from burning. I have a lot of confidence in the specialist surgeon. My biggest concern is how I am going to keep Vic in bed…Fortunately they will both be in the same hospital!
I am so tired. I have slept in a chair at the hospital and have no intention of leaving until Vic can cope without me. Hospitals are noisy and Vic is in so much pain when she moves!!
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.
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.
Today is a glorious, wonderful day!! Vic seems better and even walked down the passage to my TV Lounge and then she made us tea!!
I say “seems” because she is ill. By her own admission today, she is ill but she has decided to “live a bit”. And she is sick and tired of people telling her what to do… She concedes that we all mean it well but……
This child of mine is so stubborn!! She truly does not know the meaning of giving up. The one minute she is contemplating death and the next she is worried about who will inherit the dinner service when I die! In a moment of anger Colin once said “Vic is too spiteful to die” – I don’t think she is a spiteful person but hard-headed – now that is another story. This is one stubborn lady!
A while ago, in the early hours of the morning, I started a PowerPoint Presentation on “What makes her strong” I will share this with you…
What makes her strong?
Her Heritage
Vic, My Dad, My Mom, Jared and I
Vic comes from a long line of stubborn Vikings. Vic’s maternal grandmother was an amazing person. She too was ill most of her life. From her sickbed she “controlled” our family – as Vic now does. My Mom certainly kept the family together. Her immediate family was everything to her! We only truly realized and came to appreciate her strength after her passing.
My Dad was a wonderful caregiver and provider. A man of great wisdom who until the last two weeks of his life fought Alzheimer’s with every fibre of his body, mind and soul. He was a true gentleman who never let on that he did not know who you were. Once, when he was hospitalized, I went to fetch him on his discharge. When he saw me he exclaimed “My goodness, how wonderful to see you! Imagine bumping into you here of all places…” Dad lived with us…
This is Vic’s maternal heritage. ..Brave, strong people who do not know how to give up.
Tienie, Vic’s biological dad, was an amazing person. He lived life to the fullest – every single second of it!! He did not ever want to grow old. He wanted to die young. He died young… He died living! He hated sleeping. Considered it a waste of time. He was generous even in death. He was an organ donor.
Vic and her father on her first day of school!
Tienie and I separated when Vic was very young. He could not accept the fact that the Osteogenesis gene was passed from his bloodline to Vic. Vic’s paternal grandfather died from OI at the age of 35. All the other paternal grandchildren are unaffected. The only affected family member is Vic and now I believe Jared. The curse of Osteogenesis lives on in my beautiful, innocent grandson!
Vic comes from a long line of people who lived. It must be so hard for Vic to be trapped in a body that barely allows her to breath. Imagine a life of pain with absolutely no prospect of recovery…
Vic is the greatest warrior of all!! Living in the shadow of death has truly made Vic embrace life whilst she is still alive. She grabs the good seconds, she does not wait for good minutes… She knows that her fragile health is a ticking timebomb…
Today is a glorious, wonderful day!! Vic seems better and even walked down the passage to my TV Lounge and then she made us tea!!
I say “seems” because she is ill. By her own admission today, she is ill but she has decided to “live a bit”. And she is sick and tired of people telling her what to do… She concedes that we all mean it well but……
This child of mine is so stubborn!! She truly does not know the meaning of giving up. The one minute she is contemplating death and the next she is worried about who will inherit the dinner service when I die! In a moment of anger Colin once said “Vic is too spiteful to die” – I don’t think she is a spiteful person but hard-headed – now that is another story. This is one stubborn lady!
A while ago, in the early hours of the morning, I started a PowerPoint Presentation on “What makes her strong” I will share this with you…
What makes her strong?
Her Heritage
Vic, My Dad, My Mom, Jared and I
Vic comes from a long line of stubborn Vikings. Vic’s maternal grandmother was an amazing person. She too was ill most of her life. From her sickbed she “controlled” our family – as Vic now does. My Mom certainly kept the family together. Her immediate family was everything to her! We only truly realized and came to appreciate her strength after her passing.
My Dad was a wonderful caregiver and provider. A man of great wisdom who until the last two weeks of his life fought Alzheimer’s with every fibre of his body, mind and soul. He was a true gentleman who never let on that he did not know who you were. Once, when he was hospitalized, I went to fetch him on his discharge. When he saw me he exclaimed “My goodness, how wonderful to see you! Imagine bumping into you here of all places…” Dad lived with us…
This is Vic’s maternal heritage. ..Brave, strong people who do not know how to give up.
Tienie, Vic’s biological dad, was an amazing person. He lived life to the fullest – every single second of it!! He did not ever want to grow old. He wanted to die young. He died young… He died living! He hated sleeping. Considered it a waste of time. He was generous even in death. He was an organ donor.
Vic and her father on her first day of school!
Tienie and I separated when Vic was very young. He could not accept the fact that the Osteogenesis gene was passed from his bloodline to Vic. Vic’s paternal grandfather died from OI at the age of 35. All the other paternal grandchildren are unaffected. The only affected family member is Vic and now I believe Jared. The curse of Osteogenesis lives on in my beautiful, innocent grandson!
Vic comes from a long line of people who lived. It must be so hard for Vic to be trapped in a body that barely allows her to breath. Imagine a life of pain with absolutely no prospect of recovery…
Vic is the greatest warrior of all!! Living in the shadow of death has truly made Vic embrace life whilst she is still alive. She grabs the good seconds, she does not wait for good minutes… She knows that her fragile health is a ticking timebomb…
Vic's Final Journey 