Dying is a lonely journey. Not only for the sick person but also for the family. As hard as we may try to avoid death, the truth is that we do a lousy job of it. Science and medicine will certainly postpone it, even staying healthy might seem to delay it, but the harsh reality is that death does not wait for you, it does not ask you, and it does not listen to you. Death ignores your feelings and wants; you do not matter to death…Death is the only certainty in life! We need to remember that our existence here is fragile, and we never have as much time with people as we think we do. If there is someone or someones out there that you love, don’t neglect that and don’t put off engaging with them because waits for no-one… Vic's Journey ended on 18 January 2013 at 10:35. She was the most courageous person in the world and has inspired thousands of people all over the world. Vic's two boys are monuments of her existence. She was an amazing mother, daughter, sister and friend. I will miss you today, tomorrow and forever my Angle Child.
It has been a crazy week. Between Vic, final 2012 business meetings, a brochure photo shoot, visiting grandchildren, Jared’s birthday party and Hospice meetings I have run around in circles. I have not had time to blog or read all the blogs I am following.
Vic has had a reasonable week. I can see her getting weaker every day. At night I give Vic a Pethidine, Zantac and Buscopan injection. The Pethidine makes her sleepy. During the day she is able to tell me she needs an anti-nausea injection. At night the drug-induced sleep does not allow her the luxury of early warning. Vic projectile vomits every day of her life!
Vic has also had a couple of uncontrolled sneezing attacks and lots of hiccups. I fear she will fracture ribs and vertebrae if we are not able to control this quickly. I have started giving her antihistamine tablets. Hospice tells me it is a symptom of the kidney and liver failure and will get much worse.
Her arm is still very inflamed and painful. We are now on the 3rd round of antibiotics. The tissue in her derriere is very poor. It is lumpy and bruised. It is becoming more and more difficult finding good tissue where I can inject her.
Emotionally it is really a difficult time. Vic is spending as much time with the boys as possible. She is doing a lot of what appears to be “lasts”….
It is 11 days to Christmas, and we are looking forward to a quiet Christmas Eve with the family. Our gifts are not as extravagant as other years. Our priorities are simply different this year. This year Christmas will be a time of love and togetherness.
My poor child had a horrible night. The pain was under control, but her arm still throbbed, and she was restless. I was busy with some Christmas gifts. I tried to go to sleep, but gave it up as a bad job. So I wrote a post. At 2am this morning I had just “published” when Vic rang the intercom.
The intercom is her 911
I ran down the passage knowing that my poor child had vomited again. The poor little thing was standing in the shower covered in her 7 pm dinner and antibiotic tablets. The food had not digested at all. She was shivering and crying.
I cleaned up whilst Vic showered.
“I am sorry Mommy. I am so sorry Mommy”… Vic sobbed.
“I can’t do this anymore Mommy. I don’t want to live like this anymore….”
I eventually got into bed at 5am. Three hours sleep used to be enough sleep when I was younger. I think I am getting old. I need more than 3 hours. Maybe it is time to look at a night nurse…..
Hospice called early this morning. The antibiotics have been changed to IM injections. We cannot put up an IV drip. Sr Siza told Vic she should be admitted to hospital to have the abscess lanced and drained. Vic refused. “No more hospitals. Mommy you promised…”
Monday morning Dr Sue will come to the house and do the procedure here.
Yesterday I spoke with a wonderful young man, Marchelle. I was privileged to have worked with Marchelle worked for a couple of years. Unfortunately we lost a large contract and had to go our separate ways.
Marchelle has a pure heart. He is selfless and one of the very few people I trust with every fibre of my being. Marchelle has never let me down.
Marchelle told me he is following my blog. He asked me whether I thought the situation is truly as bad as Hospice say it is. I said I did.
He asked “what is different this time? You have been told so many times that Vic was dying, and then she bounces back…”
I started giving him the facts; Vic is in renal and hepatic failure… This time she cannot bounce back. Organ failure is organ failure…. Talking to him I thought “Marchelle is right! Why am I giving up this time? I have NEVER given up on my child, and I will not give up now.”
I walked into Vic’s room and stood in the door looking at my beautiful little girl sleeping. I am so tired that I am allowing the negativity of the situation to get to me. It was however only at 4:00 am that the reality of Vic’s situation re-settled around my heart like a lead jacket – I know my child has had enough.
Marchelle said he prays for us every day, and I believe him.
This morning Vic took her precious boys to pick up their report cards. Both Danie and I said we would take them. Vic very politely refused. She wanted to take her boys. She wanted to be first to see their marks. Maybe for the last time…
She was absolutely delighted with their marks. The boys had worked hard and deserve every mark they received. I wonder whether the boys will remember in the years to come that their Mommy got out of her sick- bed to go with them to collect their 2012 report cards.
We are so proud of them. They are brave kids.
On Sunday we will celebrate my birthday. On the 24th we will have our first Christmas dinner with Lani, Tom and all their kids. Simone still believes in Santa! On the 25th we will go to Church. On the 26th we will celebrate Jared’s birthday. On the 27th we will start planning our New Year celebrations.
Forward planning is “The power of positive thinking”…
“Worrying is carrying tomorrow’s load with today’s strength carrying two days at once. It is moving into tomorrow ahead of time. Worrying doesn’t empty tomorrow of its sorrow, it empties today of its strength.” ~ Corrie Ten Boom – I read this on Dr Bill Wooten’s blog http://drbillwooten.com/2012/11/17/todays-strength/
This is so true. I have been so worried about Vic’s latest symptoms The body is such a complex intertwined mechanism…. I am absolutely fascinated at how everything links in… I just have to discover the function of the appendix and it’s interwoven functions…
Vic is having a lousy day. She is exhausted and very swollen. Despite the injections she has been nauseous all day. This evening she had another vomiting bout. Tomorrow we will see Dr Sue again. Just maybe there is a 3rd anti-nausea type injection available
Vic also complained of a terrible “acidic” feeling.
I Googled her symptoms and found something that matches her new symptoms and blood test results.
In medicine, metabolic acidosis is a condition that occurs when the body produces too much acid or when the kidneys are not removing enough acid from the body. If unchecked, metabolic acidosis leads to acidemia, i.e., blood pH is low (less than 7.35) due to increased production of hydrogen by the body or the inability of the body to form bicarbonate (HCO3–) in the kidney. Its causes are diverse, and its consequences can be serious, including coma and death. Together with respiratory acidosis, it is one of the two general causes of acidemia.
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
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.
“Chloe, sweetie, wake up! You have to go to school!”
“Nooooooo….I don’t want you to go!!” she wailed.
“We will see you again after Christmas….and Oupie is coming to see you next week!”
“Okay!”
For the last time in a long time I dressed my precious little Chloe. I held her skinny little body and breathed in the smell of her hair. Tears ran down my cheeks when I thought “How long before I can hold her again…”
I fed her… brushed her teeth and held her cup when she drank her tea. Now I must tell you that my little Chloe is very independent and she only humoured me….
Georgia came and sat on my lap and said “Me want you to stay…” She did not cry when I left. I cried.
I hate goodbyes! There are so many tears between “goodbye baby – see you soon” and “Hello my angel, I missed you”…
Tomorrow morning I am home. I will see my beloved Vicky and all my grandchildren! Jared has been posting on his BBM status how much he misses me… It is sad to leave but that is the way life is. We can never have it all.
As much as we desire good health, joy, peace, financial security, love and laughter for us and our loved ones, it is impossible to achieve all of it! We are a blessed family. We have love, laughter, joy and peace. Good health eludes us… We cannot all be together and see one another on a regular basis. Yet we are not separated from all the children and grandchildren. And Skype is great!
I am surrounded by a wonderful family who care and love unconditionally! I have an amazing husband who I adore. I don’t have many friends but my few friends are loyal, supportive and caring.
Chloe loves treasure hunts. In May when we had a treasure hunt I hid Mr Maker surprises Chloe promptly told me that the Pirates cheated. They did not hide coins and Mr Maker presents don’t count! So this time around I went armed with a map of my room and chocolate coins …. When she gets home from school today she will go to my room to double check that I have really left! The postman delivered the Treasure Map this morning… I wish I was there to see her having fun…
Tomorrow I will go to gym with Jared and Jon-Daniel and I hope to see Henk and Yuri. Maybe I will see Kari and Simone on Friday…
My heart breaks when I look at you. Your eyes reflect your fear, acceptance of the inevitable, rebellion and pain. The morphine dulls your dark eyes…
It is so difficult seeing you in so much pain…the times when you are bent double from pain. My heart breaks when I see how you are still trying to care for your family. If only the boys knew how many tears it takes to make a sandwich…Many a time when you are sobbing from pain I see the boys pretending to sleep – as if shutting their eyes can block out your sobs… I see the helplessness in Colin’s eyes when he looks at you. It is soul destroying!!!
It is at times like this that I cry out “How much longer God? When will her suffering end?” But then I look at the Christmas tree and the Christmas lights and beg “Just one more Christmas please God!”
With the obstruction I fear that you will not make it. The morphine aggravates the situation! When will you develop another fistula? It is only a matter of time. How time do we have left?
I wish I could just hold you and protect you against the pain and death. If it was a bullet I would take it for you but how do I protect you against your own body? How can your body betray you like this?
In my mind’s eye I see you lying on a bed, strapped in, poison flowing through your veins… You are dying