Osteogenesis imperfecta – Page 3

Quiet waters of peace

Vic is very restless and agitated. Hospice says that at this stage they normally sedate the patients to make the passing easier. It would be a wonderful solution. Vic’s mind is mostly crystal clear and busier than ever. She continuously asks for photos to be taken, not necessarily of herself but of the boys, her friends and family. Last night I actually said to her (after her insisting on photos being taken of me – on my own) “Sweetie, you cannot take your cell phone to heaven with you.”

“Oh…” she said. “Why not? I think I will…”

We laughed.

In her desperate attempts to cling to life she is trying to capture images on her phone…I do know that she is imbedding the images on her heart and she will take the images of her loved ones with her.

Last night was very difficult. The Pethidine makes her hyper. She fights sleep at night! Vic is scared she will close her eyes and never open them again.

Vic clung to Danie’s hands when he came to say goodnight. “Don’t leave me Daddy! Please don’t leave me!!! I am so scared!” Poor Danie was totally distraught!

“I am so tired” Vic cries and seconds later she will try and get out of bed, so she can stay awake!

In the early hours of the morning I was exhausted when I eventually got inpatient with Vic and told her to get into bed. She looked at me and said “I sometimes think you love me to death but other times I think you hate me…”

I know she is confused at times. I will not allow these words to haunt me later. She “sees” people. She babbles non-stop.

The weight is falling off her. Her trembling fingers are bony, almost skeleton like. Her eyes are sunken and reflect her pain and anguish. My poor baby is starving to death! She has absolutely no appetite. I don’t know when last she was hungry or able to eat.

Esther and Leon came to visit today. Esther was very emotional when she saw Vic. I know she said her goodbyes today. I could see that they had spoken to their boys. Both Henk and Yuri kissed Vic whilst she was sleeping.

Jared asked me today why I don’t sedate Vic. I explained to him that she refuses to be sedated. “I think it will be better for Mom to sleep all the time now Oumie. It is too hard for her now and she is too scared…Ask Sr Siza to give her some sedation…”

Oh Lord how do I make this easier for my family? How do I spare the boys the pain of seeing their mother dying bit by bit? Do I send them to their father and have them hate me for it or do I subject them to the horror of what’s happening?

I wish Vic was in a hospital where the decisions weren’t mine. But I promised Vic “no more hospitals”. I will never go back on my word.

I am babbling.

“Oh…” she said. “Why not? I think I will…”

We laughed.

Last night was very difficult. The Pethidine makes her hyper. She fights sleep at night! Vic is scared she will close her eyes and never open them again.

Vic clung to Danie’s hands when he came to say goodnight. “Don’t leave me Daddy! Please don’t leave me!!! I am so scared!” Poor Danie was totally distraught!

“I am so tired” Vic cries and seconds later she will try to get out of bed so she can stay awake!

I know she is confused at times. I will not allow these words to haunt me later. She “sees” people. She babbles non-stop.

I wish Vic was in a hospital where the decisions weren’t mine. But I promised Vic “no more hospitals”. I will never go back on my word.

I am babbling.

” Sometimes the pain’s too strong to bear…and life gets so hard you just don’t care. You feel so alone you just sit and cry…every second you wish you could die.”

Happy birthday to you…

I hardly received any 2013 New Year’s wishes. Normally I would receive so many beautiful wishes but this year I received messages for a” peaceful New Year’s Eve filled with laughter and good memories…”

Last night my sister said in a text message “what tears do 2013 hold for you? Maybe it should stay 2012”…

Jared went a friend’s home; Danie went to bed early – he is coming down with flu; Vic was asleep so that left Jon-Daniel and I. We watched Comedy Central and had some good laughs waiting for 2012 to end.

Jon-Daniel loves making his Mommy laugh. In a way I suppose he uses humour as a coping mechanism.

“I think we should wake Mom up at 12” I said

“Okay…Let’s sing Happy Birthday to Mom….” He said with a twinkle in his eyes.

As the hooters and sirens started going Jon-Daniel and I sneaked into Vic’s room and sang “Happy Birthday to you…” Vic opened her eyes and said “What is happening?” and immediately fell asleep again.

The joke was on us.

Today was a quiet day. The boys spend some wonderful quality time with their Mom. Danie remained in bed until almost 4pm as he is feeling lousy from the flu. We all drifted in and out Vic’s room. In the afternoon Jared went for a swim. Vic went outside and spoke to him.

Jared had some questions and she patiently explained to him what an “Executor’s” duties are. She explained why Leon and I were the Executors of her will and the Trustees of their Trust. (I got some lovely photos of Vic chatting to the boys!) Vic tried to show Jared that she could whistle through an acorn… Jon-Daniel taught her! As much as she tried she could not get a sound out of the acorn. To everybody’s laughter she said “But I can do it!”

We convinced her that she should get onto the inflated lilo. The cold water would reduce her body temperature and the sun would be good for the jaundice. Very reluctantly she got onto the “non- life-saving inflatable device”. I got into the pool with Vic.

Esther and Yuri arrived and she made a dash for her camera… later Leon and Henk arrived. The boys swam and laughed and played…

It was a wonderful day filled with glorious memories. We laughed and joked and eventually ate. Esther lay with Vic and they spoke about where Vic was in her journey.

It was a special day.

I think friends and family don’t know what to wish us…How do you say “Happy New Year” to a household where death is knocking on the door? I would not know what to say to us if I wasn’t me…

But from our home to yours: We wish you a great 2013. We hope that 2013 is filled with laughter, good health, abundance and time to do some good every day. We thank you for your love and support. Thank you for your prayers and words of encouragement. You have been such an amazing source of comfort to us.

Thank you Hospice for giving us the means to have these special memories! Thank you to the manufacturers of Morphine, Pethidine, Stemitil and Buscopan…

Jon-Daniel teaching his Mom to whistle through an acorn... — Jon-Daniel teaching his Mom to whistle through an acorn…

Vic trying to whistle through an acorn... — Vic trying to whistle through an acorn…

Hi Sis, you know I love you.... — Hi Sis, you know I love you….

I am scared

Today was an horrible day. Dr Sue spent a lot of time with Vic. Siza (Hospice Nurse) was here too.

Vic’s BP is elevated and her heart rate fluctuates between 115 and 120. Her breathing is laboured. She appears to be a little jaundiced. Sue says the vomiting is due to the kidney failure.

Tomorrow we will try and run some Perfalgan intravenously. If only her veins were strong enough to tolerate an IV drip…

I am scared.

Sweet 16

On the 26th of December 1996 Jared Colin Sadie was born. He was a beautiful, healthy baby boy. I cried with joy when I first saw him and that first “rush of love” hit me.

Vic fell pregnant 6 weeks after she got married. When the kids asked us whether they could get married I had a LONG talk to them about NOT having babies. They both said “We know…” I explained the dangers of passing the Osteogenesis gene onto a next generation of innocent children.

I will never forget that dreadful Sunday night when they told us that Vic was pregnant. My heart stopped. I sobbed in the shower. For the first time in her life I feared for Vic’s life.

Vicky refused flat out to have an abortion. She said the baby a gift from God. And so he was….

Jared is an amazing young man. According to our government he is now old enough to vote, get his learners licence for a motor bike and work… I look at him and I see a little boy who was going to be a stuntman; a young child helping his Mommy cook; get out of bed; walk down stairs…

Both Jared and Jon-Daniel are loving, compassionate monuments of Vic love and mothering.

Jared is a “computer nerd” with a wonderful personality. He has a keen sense of humour and wise beyond his years. He is fiercely protective of his mother. A very dear Saudi friend of mine says Jared has a “white heart”. (Albak Abyad” an Egyptian expression that indicates a person with a good heart. It’s literal translation to English is “You have a white heart” as opposed to being a bad person with a black heart).

Vic, once again, managed to get out of bed. She was falling asleep in her chair, but managed to visit with most of the guests who came, ate something and left. Laughter and joy reverberated through the house. Vic was the proud mother. It was a happy home for the day…

The boys have a hard time coming to terms with the stage that Vic’s illness is at. Jared’s first words when he comes back into the house after Siza leaves is “What did Hospice say?”. He researches every symptom and sends me links on liver and renal failure. He is an expert on Osteogenesis Imperfecta and was 9 years old when he spoke about his Mommy at a Public Speaking lesson at school. The subject was “My Hero“. We all expected him to speak of Nelson Mandela, but he chose to speak about his Mom. (His brother followed suit two years later)

He said that his mom is his hero because despite the fact that she is so ill she still looks after them…

Jared and his Mommy

Jared had a wonderful 16th birthday. He was absolutely thrilled with the Docking Station Vic had bought for him. As soon as he gets his license we will buy him a motorbike.

She ain't heavy - she is my mother — She ain’t heavy – she is my mother

Yesterday was a milestone in Vic’s life. I fear it may be the last she will reach. It is clear that Italy will not be possible.

I was so tired last night that I slept through Vic’s 23:31 and 03:00 “Vomiting” text messages…. Vic refuses to use the intercom! She feels it is “disrespectful”.

As much as Vic resents the fact I may have to bring in a night nurse.

I remember Vic’s 16th as if it was yesterday. Now she is a grown woman with two teenage sons – nearing the end of her tenure on earth

https://tersiaburger.com/2012/08/27/kidney-stones-on-the-move/

https://tersiaburger.com/2012/10/10/i-am-taking-a-break-from-your-blog/

https://tersiaburger.com/2012/07/07/chronic-illness-versus-terminal-illness/

https://tersiaburger.com/2012/05/28/22-2-2002-to-28-5-2012/

https://tersiaburger.com/2012/06/09/9-6-2012/

https://tersiaburger.com/2012/10/16/and-the-winner-is/

Thank you God

I just finished a batch of choc-chip cookies. The house is quiet and sweet smell of the biscuits has permeated the air. The Christmas tree lights are flicking and the first batch of gifts beautifully wrapped. It is the season of Christmas. Two weeks ago I despaired that Vic would not live to see Christmas. Dr Sue came and saw Vic this morning. She lanced the cellulitis
abscess on Vic’s arm. My baby girl was so brave!! Sue told us of a young man who came to see her in her rooms with a small abscess in his face. He cried with pain. Sue told Vic what a brave person she is…I was so proud of my little girl. Vic’s heart and pulse rate is very elevated. She has a kidney infection. Kidney infections make her tired. I just checked on Vic and she is sleeping so peacefully. She has a serene expression on her beautiful face and she is truly pain-free tonight. Sitting here I am counting my blessings. My baby girl is home. I cannot begin to imagine how difficult it would have been if Vic lived elsewhere or if she was married or involved. I can now care for my child without having to consider my “position” in her life. I am able to be her mommy and take care of her. The boys are settled and happy living with us. We love having them so close to us. They are such well-behaved, kind and helpful boys! Before Vic moved home the boys, mainly Jared, had to cook most days. Now they are able to be children. Life has settled into an easy routine. We have laughter and fun. We cry and despair. We hug. We talk and constantly affirm our love for one another. Vic is spending a lot of time with her boys – talking. She helped with the preparations for Jared’s 16^th birthday party. Vic passed me the spices when I baked this year’s Christmas cakes. We laughed when we decided the cake needed another “splash of brandy”. Vic “chose” her Christmas Cake. My wonderful husband is such an amazing person. He is my rock and pillar. He loves and protects us. I am happy and content with our lives. Thank you God for this time of closeness.

Another birthday…..

Yesterday I celebrated (another) birthday.

Late Saturday night Vic’s restlessness was indicative that she was determined to be the first to wish me. At 11.30 pm she came through and said “another half hour….. I want to be the first to wish you Mommy. I just want 30 minutes alone with you on your birthday…”

“No problem angel. I’ll switch the kettle on.” I said

“I will be back in a minute” she said

I made coffee and checked some e-mails. At 12:00pm I expected her to come through singing “Happy Birthday” but no Vicky….

I went through to her room and the poor baby had fallen asleep on her bed…

Jon-Daniel came through and brought me a cup of tea on a tray, with a gift and card and a rose! “Happy birthday Oumie” he said.

He had bought a book I have wanted to read for a while “The Elephant Whisperer” – It is an inspiring, true life drama of a herd of wild African elephants on an African game reserve. The herd is destined to be shot for dangerous behaviour when this special human being, Anthony, intervenes to try to save their lives. I was so thrilled that he remembered.

Just before 01:00 am Vic shuffled into my TV lounge.

“Oh Mommy, I am so sorry I fell asleep. I thought I would just close my eyes for 5 minutes whilst you make the coffee…”

We sat and chatted for a while. Vic shared her good wishes with me and we just sat and spoke. We spoke about our very special mother-daughter relationship. We spoke about years gone by and how blessed we are to have this time together. (I cannot imagine Vic married and living in someone else’s home on her final journey.)

The girls, Esther and Lani, arrived at 10:00am with gifts, a cooked meal, dessert and cake. The grandchildren set the table… My sister Lorraine and dear friend Judy arrived bearing armloads of gifts. The grandchildren had written me letters and cards – it was so special. Vic bravely cooked a pot of rice and had lunch with the family. All the grandchildren swam and played tug-a-war! We laughed and joked.

It was a perfect day.

Esther and Lani planned the day to start early whilst Vic is at her best. As the day progresses so her energy levels decrease. Immediately after lunch Vic went to bed. She was in so much pain and absolutely exhausted.

All the grandchildren wanted to stay.

Sunday evening we Skyped my son and his family in the UK. Vic and Danie spoke. Vic and Danie Jnr have a special bond.

Twenty two years ago I married Danie Sr and his four children; Esther 23, Lani 18, Liza 16 and Danie 11… Danie married me and one, sick, very protected, spoilt brat, Vicky, aged 16. Vic and Danie Jnr were the two kids who lived with us. Vic embraced her new family. (I was petrified of the children!)

Vic’s siblings have been amazing over the years. I could never have coped as well as I do if it was not for their love, support and encouragement. The siblings are fiercely protective of their little sister.

Vic and Danie Jnr spoke for at least 10 minutes last night. It was a sad conversation between a brother and his older, little sister.

“I miss you so much Little Brother” Vic said

“I miss you too Vic. How are you feeling?” Jnr asked

“I am battling Boetie (Little Brother) Vic said

“We are coming to visit in April then I will see you Vic”

“I don’t know if I am going to make it to April” Vic said

“Just hang in there Vic. It is not that long to April…” Jnr consoled her

“I know but I am tired. I am just missing you” Vic cried

“I will fly over for a weekend. I want to see you again” Danie promised

Vic was so tired last night. Her little body cannot handle parties anymore. She tries so hard. This weekend we will have Jared’s 16^th birthday. It is only his birthday on the 26^th but most of his friends are away for Christmas so we have his friend party an early in December.

I know this will more than likely be another last for Vic.

Vic is sleeping peacefully

It is 12:42am and Vic is sleeping peacefully. She had a “good” day. In between her naps she had lunch with a friend, a visit from Esther and a walk in the garden with Jared!

Vic’s legs are growing very weak. The cellulitis on her arm has worsened despite the antibiotics. It is now oozing pus. Sr Siza will see her tomorrow, and I believe Vic will have to go onto IV antibiotics. She had a violent vomiting spell just after she took her antibiotic tablets tonight. It is very difficult for her to keep tablets and food down. Despite the six-hourly anti-nausea injections she has…. And of course there is the problem of the poor absorption.

“I can’t do this anymore…” Vic mumbled to herself tonight after the vomiting episode.

The situation is getting to Danie. My poor husband tries so hard to be strong and make life easier for the rest of us. Jared and Jon-Daniel are deeply conscious of the situation.

“Life will be horrible without Mommy” Jared said today. “She takes so much of our time, and such a big space in our lives…. Mommy has such a presence Oumie…”

We spoke about his little brother and Jon-Daniel’s inability and aversion to discuss his emotions.

I realised that the boys are already starting to dread the void Vic’s passing will leave. Anticipatory grief is a killer. It is unfair that these two beautiful boys have to experience so much pain and hardship in their young lives. They should be riding their bikes and getting up to mischief. Now they are stressed out because their mother is dying.

I am too tired to write anything that makes sense. I just need to record today. I never want to forget today.

I want to remember how I felt when I lay with my child this afternoon. I want to remember her tears when she spoke to her sister. I want to remember the smell of her vomit. Maybe it will make it easier to accept later on.

Dear Radio Station….

In the early hours of the morning I wrote a letter to a very popular radio station in Gauteng (South Africa). 94.7 http://www.highveld.co.za/events/events/christmaswish2011/index.asp 94.7 have a Christmas Wish List.

Each year, the 94.7 Highveld team tries to make a few lives a little easier during the festive season by finding sponsors to assist those who are in desperate need.

Listeners are asked to nominate the people in their lives who could use a break, and two of these are granted each morning for four weeks. I decided to write a letter and ask for help for our Hospice project that will kick off on 1 January 2013 with limited resources.

I hope and pray Stepping Stone Hospice will be selected and that pharmaceutical companies will sponsor the pain medication for the indigent people. Please hold thumbs with us that this will work!

My name is Tersia. My 38-year-old daughter is terminally ill.

Vicky suffers from Osteogenesis Imperfecta, a brittle bone disease. In people with Osteogenesis Imperfecta, one of the genes that tell the body how to make a specific protein does not function. This protein (type I collagen) is a major component of the connective tissues in bones. Type I collagen is also important in forming ligaments, teeth, and the white outer tissue of the eyeballs (sclera).

As a result of the defective gene, not enough type I collagen is produced, or the collagen that is produced is of poor quality. In either case, the result is fragile bones that break easily. Collagen in the body is what cement is in a building. It keeps the tissue/bricks together! Vicky has poor quality collagen.

Vic has a very bad spine. Her neurosurgeon decided to do experimental surgery in 2002. “The Prodisc (Total Disc Replacement) is an implant designed to mimic the form and function of a healthy intervertebral lumbar disc. It is implanted during spinal arthroplasty after the diseased or damaged intervertebral disc has been removed. The goal of artificial disc replacement is to alleviate the pain caused by the damaged disc while preserving some or all of the natural motion of the lumbar spine. By preserving the natural motion, it is hoped that the adjacent levels of the spine will not be subject to additional stress as they are in traditional fusion surgery.” http://www.spine-health.com/treatment/artificial-disc-replacement/fda-approves-prodisc-lumbar-artificial-disc;

Vic had the Prodisc procedure on Wednesday morning, the 13^th of February 2002. The operation was scheduled to last “two hours and thirty-seven minutes”. Six hours after Vic was pushed into theatre we were told that she is in recovery. Vic would go to ICU for “pain control”.

She was pretty out of it the entire Wednesday and Thursday. Friday Vic was conscious and in dreadful pain. No amount of morphine brought her pain relief. Her face and nose itched in a reaction to the morphine. Vic was losing her mind with pain.

Early Friday morning I cornered the surgeon. He said she is fine. I kept badgering the ICU staff to increase her pain medication. I pointed out that her heart rate was elevated and she was running a temperature. Her breathing was shallow and fast. If it was today I would have recognized the danger signs.

That evening I was too scared to leave. My child was in trouble. Just after 8pm the doctor came and spoke to me. He explained that Vicky’s tissue is extremely poor (surprise surprise!!) and that there was a small chance that her bowel may have been perforated. The X-rays did not show up anything but my concern had “alarmed” him.

At 9.30 pm Vic was pushed into theatre again. Eleven hours later she was rushed back to ICU. Sunday the 17^th of February Vic went back to theatre for a further 9 hour surgery. She came out ventilated.

She spent 22 days on the ventilator hovering between life and death.

Doctor arrogance and negligence has led to 10 years of sheer undiluted hell and misery. The Prodisc was never removed. The Prodisc is systematically spreading sepsis to Vic’s intestines. As a direct result of the blotched back surgery Vic has had 81 abdominal procedures over the past 10 years. She now has a frozen abdomen, battles obstructions and fistula, sepsis and Addison’s disease. The doctors have said they can do no more for her.

Vic is now under Hospice care. She suffers terrible debilitating pain and often fractures vertebrae when vomiting… Vic’s organs have started shutting down. She is in renal and hepatic failure.

Vic and I share a dream of starting a Hospice in Alberton. Alberton does not have a Hospice and falls under Hospice Witwatersrand. It is far, and the townships i.e. Palmridge, Thokoza and Edenpark are not serviced at present.

It is a sad fact that only 5% of South African’s are able to die a “good death”. 95% of the population will die in excruciating pain.

The World Health Organization describes palliative care as “an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.” (WHO 2002)

We have registered a Non-Profit-Organisation and are in the planning stages of starting a Hospice in Alberton that will provide palliative home care to all residents in Alberton that need our help. We have approached one of the caregiving associations in Alberton to see if they could provide us with space to operate from. I have no doubt that we will have community buy-in if we are able to create palliative care awareness. We aim to start operating as Stepping Stone Hospice & Care Services by February 2013

Stepping Stone Hospice & Care Services Mission Statement

Adding life into days when days can no longer be added to life.

Stepping Stone Hospice & Care Services is a not-for-profit organization dedicated to providing comprehensive, compassionate services to patients and their loved ones during times of life-limiting illnesses.

Since dying is a part of the normal process of life, the focus of Stepping Stone Hospice & Care Services is to enable our patients to live as fully and comfortably as possible, to provide dignified palliative care, to assist patients’ loved ones in coping with end-of-life issues and the eventual death of the patient, and to improve care for all patients at the end of their lives by example and education.

Stepping Stone Hospice & Care Services’ goal is to provide physical, emotional, and spiritual comfort. Stepping Stone Hospice & Care Services’ exists in the hope and belief that through appropriate care, education and the promotion of a supportive community sensitive to the needs of the persons facing the end of life, patients and their loved ones may be able to obtain physical, mental, and spiritual preparation for the end of life, bereavement and renewal.

Stepping Stone Hospice & Care Services believe that Hospice care should be available to any and all persons with a life threatening illness for which there is no cure or for persons who elect not to attempt a cure, resulting in a limited life expectancy.

We are hoping that Vic will live to spend another Christmas with her two boys and the family. I pray that she lives long enough to see her dream come true. Please help make her dream come true…

We ask nothing for ourselves as a family. We do however seek your kind consideration for assistance in any form that will enable us to provide palliative care to the 95% of dying community in Alberton.

We need equipment such as wheelchairs, subcutaneous drivers, oxygen measuring equipment, walkers etc.

If there is any way you are able to help us we would truly appreciate it!

No-one should be denied the right to die a “good death”

I am blogging Vic’s Final Journey. I blogged on palliative care in this post https://tersiaburger.com/2012/09/17/pain-keeps-you-alive-2/ and about Vic’s compassionate nature https://tersiaburger.com/2012/11/14/a-night-out-of-hell/. If you are in doubt about whether this is a worthy cause please read some of the blog. I am not seeking publicity for my blog – just help!

Thank you for the wonderful work you do in helping the community.

A blessed Christmas to you all.

Best regards

Tersia M Burger

A night out of hell

Vic had a night out of hell! The nausea was vicious and unrelenting. Pain reduced Vic to a whimpering bundle of human flesh.

Vic’s palliative Care physician, Dr Sue, visited Vic this morning. I think she was a little taken aback by Vic’s condition.

Sue is an amazing person. She was so gentle with Vic. Vic’s heart rate is fast and her blood pressure is 101/58. Vic has a bronchial infection, her liver is taking severe strain and the sepsis has flared up – badly. Her oxygen saturation levels are low – 90%.

Sue gently explained that although Vic is running a fever her body’s “warning systems” have started shutting down….. Vic is very warm to the touch yet the thermometer only reflects a temperature of 36.8⁰.

I asked her what I was doing wrong because sometimes, when I inject Vic and withdraw the needle, blood and/or the injection fluid spews out! Sue explained that it because Vic’s collagen is so poor…. In layman’s terms; the flesh does not “seal” when I extract the needle…. That is why the subcutaneous syringe driver did not work and blood and whatever else spews out.

Vic is such as gentle, beautiful, caring human being. Last night when I gave her an additional morphine injection, in desperation, she said “Mommy, what do poor people do who have no access to pain medication?

As a layman with access to Google I Googled “low oxygen saturation” and nearly had a heart attack of my own.

Basically, a saturation of 97% of the total amount of hemoglobin in the body is filled with oxygen molecules. A range of 96% to 100% is generally considered normal. Anything below 90% could quickly lead to life-threatening complications. The margin between “healthy” saturation levels (95-98%) and respiratory failure (usually 85-90%) is narrow. If oxyhemoglobin is low (below 90%) inadequate amounts of oxygen will reach body cells!

As a rule of thumb, respiratory failure usually occurs when saturation (SpO2) falls to 90%, although some patients with chronic respiratory disease may tolerate lower saturations. http://www.favoriteplus.com/oxygen-saturation.php

Every time your blood oxygen level falls below 92% saturation your body suffers drastic consequences Insufficient oxygen level is an immediately life threatening issue. http://www.heartfailuresolutions.com/34/oxygen/low-oxygen-levels-how-low-is-too-low-and-should-you-worry

By tomorrow afternoon we should start getting the results in from the blood tests and blood gases. In the interim Sue has increased the amount of intravenous anti-nausea medication as well as the pain medication. Dr Sue will make a call tomorrow whether Vic should go onto oxygen or not.

We have cancelled all our vacation plans. We desperately wanted to take the boys away for a couple of days to give them a break, but it is not possible. We will have the best Christmas ever. A Christmas filled with love and togetherness…. Maybe our last.

Signposts for Dying

Yesterday I posted on “time”. Today after the visit from the Hospice sister I actually realized that just maybe Vic has entered the first stages of dying

Some of the stages of dying start to be discernible a few months before death occurs.

Vic has become less active; she rests more, sleeps more and has withdrawn into her own inner realm.

Vic is reliving memories and spends a lot of her awake time talking to the boys about her childhood, her “illustrious” school career and their childhoods. This year she relived every minute of her father’s final journey… Vic has started living in the past.

I read that it is the terminally ill’s way of taking stock of their lives and making their peace with it.

Vic no longer eats big meals and I seldom hear her say “I am ravenous”. Due to the 81 abdominal surgeries and multiple bouts of septicemia Vic’s absorption is very poor. (Poor absorption = BIG appetite!) Vic used to have the appetite of a horse – always nibbling and scrounging for food. Now it is sheer discipline that keeps her eating. She knows she cannot have medication without eating first. Strange thing is that she is not really losing weight. Hospice says it is due to the high levels of cortisone she takes… I have been told by Hospice not to worry about her loss of appetite. Her body does not need a lot of fuel (food) anymore because it is not burning a lot of energy anymore….

The effect of the reduced food and liquid intake is that the body starts producing chemicals that create a feeling of mild euphoria. Our bodies actually start relaxing into this stage of dying.

Vic still drinks a fair amount of coffee. She used to drink it warm but now she dozes off before she has finished her cup of coffee. She will wake up and take a sip of cold coffee… A cup of coffee now lasts a long time.

Vic spends the majority of the day in bed, gently dozing…. It is not a deep sleep. It is as if her little body is preparing to hibernate….preparing for what lies beyond death whether it is Heaven, Nirvana or the Other Side….

Reduced appetite and increased sleep is called “Signposts for dying”.

A couple of weeks ago Vic was very emotional. She would tear up without any reason. This stage has passed. It is as if her tears cleansed her soul.

Vic is battling with loneliness. She hates being alone. If she could she would have one of us around her all the time. She often complains that we do not spend time with her. We do spend a lot of time with her. She just dozes off and then we leave to carry on with our lives… The boys are writing exams – they have to study; I have to work…. Dying is a lonely journey

Vic is not in good shape at all. She is suffering severe cramping and nausea that is not responding to any of the medication. The Hospice Sister called the doctor this afternoon and asked her to see Vic in the morning. She also suggested that Vic be admitted to Hospice In-Patient’s. Vic and I firmly declined…

It is obvious that Vic has one or other infection. I think it is the abdominal sepsis. She seems flushed and feels hot and cold. The thermometer does not reflect her running a fever. This is obviously something as Ceza mentioned it to the doctor. She explained that this happens when the auto-immune system is compromised. I have tried to Google it but without too much success. I will ask the doctor tomorrow morning.

Vic is in terrible pain tonight. I have already given her double her normal evening morphine injections; double the quantity of morphine syrup; I have changed her Durogesic patches…. I lay behind her back and gently held her until her breathing became deep and even. She whimpered in her drug-induced sleep….

I know the shutting down process has started. Not because Hospice told me but because Vic told me.

Will my poor baby’s hell ever end? If there is a lesson to be learnt PLEASE God show me what it is so I can learn it!! This has come to an end!

Tears are sacred…

“There is a sacredness in tears. They are not the mark of weakness, but of power. They speak more eloquently than ten thousand tongues. They are messengers of overwhelming grief…and unspeakable love.”

–Washington Irving

Vic’s Roller Coaster….

 The Voyage
Located at Holiday World in Santa Claus, Indiana, this roller coaster is a wooden hybrid consisting of a steel structure and wood tract. The lift goes up 163 feet, before falling 154 feet, then up and down 107 feet, and once more up and down 100 feet. Not only that, it goes through five tunnels, and it is the second longest wooden roller coaster in the world with a run of 6,442 feet. The top speed for the roller coaster is 67.4 miles per hour, third fastest in the world among wooden roller coasters. If the drops and trips through the tunnels was not enough to make you cringe, there are three 90-degree bank turns. http://roadtickle.com/worlds-scariest-roller-coasters

The life of someone who is chronically ill can be equated to being on a roller coaster ride. Physically (and emotionally), you can be up and hopeful one minute and down and despairing the very next. The illness inevitably takes unexpected and unpredictable turns. One disease can dispose you to or give rise to another. Cortisone suppresses the immune system and is used to treat inflammation. Cortisone weakens Vic’s bones further and has resulted in her developing Addison’s….This is frightening.

Every chemical that enters your body has a side effect. Correct and adequate pain control, a healthy diet, balanced lifestyle is needed to minimize the effect of the illness on your daily life. Living with illness affects every part of your life and every significant relationship you have.

There have been times in the past couple of months that all Vic can do is lie in bed and breathe. Completing simple tasks is a cause for celebration….if Vic is able to get out of bed, showers and put on clothes, all in the same day, it is a major achievement. There have been days (few and very far in-between) that she has been well enough to pick up the boys from school, take them for a milkshake. She attended Jared’s confirmation and Jon-Daniel’s prize giving… We are so grateful for the good days!

Vic is going through a grieving stage where she (once again) is experiencing profound grief for the life that she had known and which has been lost forever. Vic is feeling lost and confused. She is on the down ride hurdling to who knows what stage of her journey.

Vic is so sad that she is unable to actively participate in her children’s lives. Most friends have stopped calling. Her sense of identity is blurred. She has been reduced from being a wife and mother to “a child”.

Danie and I planned to go to dinner on Friday night. Vic was not well so we decided we would go on Saturday. On Saturday Vic had another lousy day. She fluctuated between being confused and weepy. She was up and down like a little jack in the box. By Saturday night she was asleep on her feet. The intestinal cramping kept her awake. She was weeping from pain and frustration.

Last night Vic cried “Mommy, I am such a burden. You don’t have a life because of me.”

“Sweetie you are not a burden.”

“I am” Vic sobbed. ”You can’t even go to dinner with your husband because you don’t want to leave me alone.”

“Sweetie, it was our choice to stay home” I said

“But I have ruined your life” Vic cried….

Jared spent the weekend with a friend. The child never goes out. The two of us are too scared to leave. I suppose we have become overprotective control freaks.

I have come to realize that I must take a break. It is not only for my own sanity but for Vic and Jared’s sake’s too. My protective behavior is a bad example to Jared and is causing Vic distress. My entire family is concerned that I will “crack” under the pressure.

I hope to fly to England for just over a week to spend some time with my UK children. I have so much to arrange. I must sort out the toy cupboard in the girls’ bedroom to make space for a nurse; I must appoint a nurse; get adequate medication in; get Hospice to okay the trip; buy groceries to see the family through and cook a couple of emergency frozen meals..

Vic’s symptoms wax and wane on this roller coaster ride of hers. Her illness is slowly depleting her energy reserve. A cold or infection can overwhelm her ability to fight it and her overall health and functioning can change dramatically – very suddenly. There will come the day that we will not be able to clear the partial obstruction or to contain the infection…..

I hope that it will not happen whilst I am away.

The albatross

2073865618_b074b2f99e — http://cedequack.wordpress.com/2007/11/29/el-mundo-de-los-albatros/

The albatross is a large seabird with a wingspan of up to eleven feet. The albatross are regarded as the planet’s ultimate frequent flyers. The albatross don’t flap their wings, they use wind energy. An average black-browed albatross may cover 100 miles a day during its lifespan of more than 40 years. Over a lifetime, an albatross may cover 1.5 million miles.

A master at gliding, the albatross can stay aloft on virtually motionless wings for many hours at a time. For that reason, seamen used to believe that the albatross had magical powers. There was also a belief that albatrosses, hovering endlessly above the ships at sea, contained the souls of lost sailors, former comrades of the sailors below. Many sailors believed that disaster or death would haunt anyone who harmed or killed the bird.

In 1798 the great English poet Samuel Taylor Coleridge made albatross mythology the basis for his famous poem The Rime of the Ancient Mariner. The Ancient Mariner (that is, the “old seaman”) tells the story of how he, while on a ship at sea, killed an albatross for no apparent reason. Later the wind stopped blowing, and the ship could not reach port to get fresh water.

The crew assumed that the disastrous turn of events occurred because of the death of the albatross. Angry at the Ancient Mariner, the crew picked up the dead bird and hung it around the man’s neck as a symbol of guilt and punishment. The profound intent of the symbolism was reflected in the Ancient Mariner’s own words:

“Instead of the cross, the albatross

About my neck was hung.”

Today that imagery has generalized, so that anything that causes deep, persistent anxiety can be called an albatross. And an encumbrance that hinders accomplishment is an albatross around one’s neck.

(Principal sources: Oxford English Dictionary; Darryl Lyman, Dictionary of Animal Words and Phrases, Jonathan David Publishers, http://www.jdbooks.com)

Vicky suffers from Osteogenesis Imperfecta, a brittle bone disease. In people with Osteogenesis Imperfecta, one of the genes that tell the body how to make a specific protein does not function. This protein (type I collagen) is a major component of the connective tissues in bones. Type I collagen is also important in forming ligaments, teeth, and the white outer tissue of the eyeballs (sclera).

As a result of the defective gene, not enough type I collagen is produced, or the collagen that is produced is of poor quality. In either case, the result is fragile bones that break easily. Collagen in the body is what cement is in a building. It keeps the tissue/bricks together! Vicky has poor quality collagen.

Vic has a very bad spine. Her neurosurgeon decided to do experimental surgery in 2002. The Prodisc Total Disc Replacement is an implant designed to mimic the form and function of a healthy intervertebral lumbar disc. It is implanted during spinal arthroplasty after the diseased or damaged intervertebral disc has been removed. The goal of artificial disc replacement is to alleviate the pain caused by the damaged disc while preserving some or all of the natural motion of the lumbar spine. By preserving the natural motion, it is hoped that the adjacent levels of the spine will not be subject to additional stress as they are in traditional fusion surgery. http://www.spine-health.com/treatment/artificial-disc-replacement/fda-approves-prodisc-lumbar-artificial-disc;

Vic had the Prodisc procedure on Wednesday morning, the 13^th of February 2002. The operation was scheduled to last “two hours and thirty-seven minutes”. Six hours after Vic was pushed into theater we were told that she is in recovery. Vic would go to ICU for “pain control”.

She was pretty out of it the entire Wednesday and Thursday. Friday Vic was conscious and in dreadful pain. No amount of morphine brought her pain relief. Her face and nose itched in a reaction to the morphine. Vic was losing her mind with pain.

Early Friday morning I cornered the surgeon. He said she is fine. I kept badgering the ICU staff to increase her pain medication. I pointed out that her heart rate was elevated and she was running a temperature. Her breathing was shallow and fast. If it was today I would have recognized the danger signs.

That evening I was too scared to leave. My child was in trouble. Just after 8pm the doctor came and spoke to me. He explained that Vicky’s tissue is extremely poor (surprise surprise!!) and that there was a small chance that her bowel may have been perforated. The X-rays did not show up anything but my concern had “alarmed” him.

“Mommy, you must decide. We can take her back into theater and check her out. The chances are that we are going to subject her to unnecessary anesthetic and surgery. The decision is yours…”

“Take her back to theater tonight” I said

“I will get a specialist surgeon to do the surgery” he said.

At 9.30 pm Vic was pushed into theater again. Eleven hours later she was rushed back to ICU. Sunday the 17^th of February Vic went back t theater for a further 9 hour surgery. She came out ventilated.

She spent 22 days on the ventilator hovering between life and death.

Doctor arrogance and negligence has led to almost 11 years of sheer undiluted hell and misery. I wish there was a way I could make the arrogant fool pay for Vicky’s lost life. I wish I could put him in Vic’s shoes for one day. I wish with every fiber in my body that I could make him give the boys back their mother. I wish my child could be pain-free.

The Prodisc was never removed. The Prodisc is systematically spreading sepsis to Vic’s intestines. Thank God for adhesions.

I digress. The specialist surgeon, Brendan Bebington, which Dr Frank S tried to get to do the surgery that Friday night, wife was in labor His locum was called in. Years later (after surgery maybe 30) we ended up back with Dr Bebington again. He has managed to keep Vic alive for many years.

Brendan calls Vic his “albatross”. He is still consumed by guilt that he wasn’t available to do her emergency surgery… I wonder whether the neurosurgeon ever thinks of her?

I want to reiterate at this point that the Prodisc is an excellent alternative to spinal fusions. Surgeon arrogance is the cause of this disaster! Giving the choice again, we would more than likely opt for the same procedure again. Different surgeon.

When the albatross glides across the skies it is stunningly graceful and beautiful. But when the albatrosses webbed feet touch down on earth it walks clumsily, like a staggering drunk, and becomes the object of ridicule and pity.

One day Vic will soar through the sky, graceful and beautiful. Free from pain and suffering!

Remission 15.10.2012

Vic could live like this. We could live like this. Please let this continue! Today I pray that this is the case. I pray for a miracle. I pray that Vic is in remission.

Remission (medicine), the state of absence of disease activity in patients with a chronic illness, with the possibility of return of disease activity. http://en.wikipedia.org/wiki/Remission

Remission 15.10.2012.

Remission 15.10.2012

On the 17^th of September Vicky was accepted onto the Hospice program. Dr Sue Walters, the Hospice doctor and Sr Ceza, Hospice Nursing Sister, thought she would die within days. Vic was barely conscious and too weak to walk. Vic was breathing but had already ceased to live!

In two days’ time we celebrate Vic’s “One Month with Hospice” and I think she is getting stronger every day. We still have bad days but her pain control is great! Vic is reasonably mobile; she laughs and spends constructive time with the boys and the family! She is sorting out photos and all sorts of things that she has neglected for months. She is spending less time in bed. She is sleeping less and eating more.

It is as if she has a new lease on life!

Could it be possible that the pain was killing her? Is it possible that the adhesions have stopped their devastating path of destruction? That just maybe the sepsis has cleared?

Vic still needs assistance with basics. Vic could live like this. We could live like this. Please let this continue! Today I pray that this is the case. I pray for a miracle. I pray that Vic is in remission.

Remission (medicine), the state of absence of disease activity in patients with a chronic illness, with the possibility of return of disease activity. http://en.wikipedia.org/wiki/Remission

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