Posted in A Mother's Grief, Bereavement, Death of a child, Family Life, Grief, Terminal Illness, Vicky Bruce

We need a miracle again….


 

 

 

 

I posted this a year ago.  We never did get the miracle we needed.Image (195)

Vic's Final Journey

Daniel and Vic 29-01-07

Sr Siza examined Vic today.  She phoned Dr Sue who will be in tomorrow morning.  She also brought a script with for Dalacin antibiotics.  The cellulitis has spread to all three the subcutaneous sites.

Siza expressed her concern at Vic’s decline…

Last Friday Danie, my husband, came and sat next to me and said “I know everyone says it will be better for Vic to die than live in this pain but I was thinking how hard it will be for us without her…”

That statement really shook me.  Up until now death has been a hypothetical issue… Doctors diagnoses and prognosis…predictions…  I have never really considered living without my child.

Last week Siza and I met with the CEO of Amcare, a large community project that provide community based feeding schemes, HIV/AIDS Counselling, Home-based care, skills development, ARV Clinic, women and children shelters.   We are hoping that they…

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Posted in A Mother's Grief, Bereavement, Death, Death of a child, Grief, Terminal Illness, Vicky Bruce

A Poem About a Mother’s Love for Her Very Sick Child


I posted this when Vic’s death was a future event.  I did not realise how dreadful the loss would be.  How devastating the longing for my child.  How severe the physical heartache would be… Today I would give everything I own just to hug and hold Vic one more time.

  Image

I know that I would do all things for you.
My spirit would always take care of you.
And when I die and leave this world behind.
You can be rest assured that my love will stay behind.

Even though sometimes we’re far apart.
You have always remained right here in my heart.
I will forever whisper in the wind
Unconditional love that’ll forever stay within.

If only I could go wherever you go
So I could do things I need to do for you.
Since I can’t, the best sacrifice I can give
is keep you in my heart and allow you to leave.

I’m lifting up the burden in your heart
‘Cause I know that you don’t know where to start.
I’m transferring all the pain inside of you
Into my care, into my heart, and now it’s through.

I love you so much and I know that I can bear
This greatest pain to let you go, I swear.
Know in your heart that my love will forever stay
Even though I would seem so far-away.

I’ll be your strength that’s why I’m relieving you
Of all the pain and tears inside of you.
No need to worry for all your pain will be gone.
It will be with me now, and I shall carry on.

You may think I’m letting you go without a fight.
If you only knew how I fought for you each night.
Just remember that there are signs everywhere.
So look around and acknowledge that they are there.

God said to me that love will always prevail.
And each day there is a tale for you to tell.
If you could already see the signs before your eyes.
Embrace it now. Let it stay. It is your guide.

God said the signs may be a word or two
When you least expect it, it is said to you.
It may also be the people that you have met.
Places, names, or things that you kept.

God told me to tell all these things to you
So happiness would set in and peacefulness, too.
I’m always here, and I’ll always love you.
I never wanted you to be in pain. It’s OK for you to go.

http://authspot.com/poetry/a-poem-about-a-mothers-love-for-her-very-sick-child/?fb_action_ids=3587335596077&fb_action_types=og.likes&fb_source=timeline_og

Posted in Bereavement, Uncategorized

Physical Symptoms of Depression….


Since Vic’s blotched back surgery in 2002 I have been on anti-depressants. The anti-depressants allowed me to continue functioning; fighting – living. It made life bearable. I was able to survive and support my child through 11 years of hell. The tablets certainly dulled my senses, my emotions. I have also gained 15 kgs in weight.

I have decided that I can no longer rely on medication. I have to take back control of my life. I have to heal. I have to let go of all my crutches.

I know I have to wean myself off the medication… Now that I no longer have symptoms and treatments to research to keep Vic alive, I decided to research depression. It has been absolutely amazing! I will be doing a series on depression and the treatment thereof.


Feelings of sadness, hopelessness, and anxiety are obvious signs of depression. A less known fact is that depression can also cause unexplained physical symptoms. Physical pain and depression often go hand in hand….

Depression has no respect for colour, creed, sex or nationality. Depression does not discriminate.

The exact cause of depression is not known. Depression seems to be related to an imbalance of certain chemicals in your brain. Some of these same chemicals play an important role in how you feel pain. So many experts think that depression can make you feel pain differently than other people. An episode of depression may also be triggered by a life event such as a relationship problem, bereavement, redundancy, illness; or it can develop without any reason; there may be some genetic factor involved that makes some people more prone to depression than others. Women are more predisposed to depression than men i.e. postnatal and menopausal depression….

Depression is quite a common cause of physical symptoms. But, the opposite is also true. That is, people with serious physical conditions are more likely than average to develop depression.

A high percentage of patients with depression who seek treatment, in a primary care setting, report only physical symptoms, which can make depression very difficult to diagnose. Many people suffering from depression never get help because they don’t realize that pain may be a symptom of depression. The importance of understanding the physical symptoms of depression is that treating depression can help with the pain–and treating pain can help with depression.

Physical pain and depression have a deeper biological connection than simple cause and effect; the neurotransmitters that influence both pain and mood are serotonin and norepinephrine. Dysregulation of these transmitters is linked to both depression and pain.

I have noted a common denominator in the lives and blogs of chronic pain sufferers – depression. Pain in its own right is depressing. Depression causes and intensifies pain. Some research shows that pain and depression share common pathways in the limbic (emotional) region of the brain. In fact, the same chemical messengers control pain and mood. According to an article published by the Harvard Medical School, people with chronic pain have three times the average risk of developing psychiatric symptoms–usually mood or anxiety disorders–and depressed patients have three times the average risk of developing chronic pain.

The link between pain and depression appears to be a shared neurologic pathway. Some antidepressants, such as Cymbalta and Effexor, is used to treat chronic pain.

Most of us know about the emotional symptoms of depression. But you may not know that depression can be associated with many physical symptoms, too

In fact, many people with depression suffer from chronic pain or other physical symptoms. These include:

  • Headaches. Headaches is a common symptom of depression. Research found that over a two-year period, a person with a history of major depression was three times more likely than average to have a first migraine attack, and a person with a history of migraine was five times more likely than average to have a first episode of depression.
  • Back pain. Back ache is aggravated by depression. A study from the University of Alberta followed a random sample of nearly 800 adults without neck and low back pain and found that people who suffer from depression are four times more likely to develop intense or disabling neck and low back pain than those who are not depressed.
  • Muscle aches and joint pain. Depression can make any kind of chronic pain worse. According to research published in the Journal of General Internal Medicine, arthritis-like physical symptoms may improve if the depression is treated with medication.
  • Chest pain. Chest pain must be checked out by a doctor immediately. It can be a sign of serious heart problems. But depression can contribute to the discomfort associated with chest pain. A study from the Sahlgrenska Academy, University of Gothenburg, Sweden, indicates several common factors among those affected by chest pain not linked to biomedical factors such as heart disease or some other illness–depression was one of the significant common factors.
  • Digestive problems.  Queasiness, nausea, diarrhoea and chronic constipation can all stem from depression. Studies show that up to 60 percent of people with irritable bowel syndrome (IBS) also have a psychological disorder, most commonly depression or anxiety. According to one study published in General Hospital Psychiatry, those who reported symptoms of nausea were more than three times as likely to also have an anxiety disorder, and nearly one-and-a-half times more likely to suffer from depression. Depression is a possible cause for digestive disorders
  • Exhaustion and fatigue. No matter how much one sleeps, they still feel tired. Getting out of the bed in the morning is very hard, sometimes even impossible. Fatigue and depression are not a surprising pair. Depression and fatigue feed off each other in a vicious cycle that makes it hard to know where one begins and the other ends. Researchers have found people who are depressed are more than four times as likely to develop unexplained fatigue, and those who suffer from fatigue are nearly three times as likely to become depressed.
  • Sleeping problems. People with depression often have difficulty falling asleep, or awaken in the early hours of the morning and find themselves unable to get back to sleep. It is reported that 15 percent of people suffering from depression sleep too much. Lack of sleep alone doesn’t cause depression, but it can contribute–and lack of sleep caused by other illness or anxiety can make depression worse.
  • Change in appetite or weight.  Several studies have found excess weight to be linked with depression symptoms, a history of depression, and other measures of psychological distress (e.g. anxiety). Others suffering from depression experience a reduction in appetite i.e. weight loss.
  • Dizziness or light-headedness.

Because these symptoms occur with many conditions, many depressed people never get help, because they don’t know that their physical symptoms might be caused by depression. These physical symptoms aren’t “all in your head.” Depression causes real changes in your body.

http://www.examiner.com/article/adult-de 1

http://www.patient.co.uk/health/depression

http://www.care2.com/greenliving/9-physical-symptoms-of-depression.html#ixzz2YHErmwr7

http://www.what-is-depression.org/physical-symptoms-of-depression/

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC486942/

http://www.depression.com.au/index.php?option=com_content&view=article&id=25&Itemid=30

Posted in A Mother's Grief, Death, Death of a child, Grief, Vicky Bruce

I wish that…


IMG_4810Someone wrote a poem for me.  I am grateful for the hand of comfort that was extended by a stranger.  This stranger happens to be ill and suffer debilitating pain.

I was so touched!  Thank you Belinda!!

13JUN2013 by http://busymindthinking.com/2013/06/13/i-wish-that

I wish that I had known you
when you struggled with your pain
but I didn’t know your situation
oblivious even to your name

I wish that I could have offered
an embrace when tears you cried
saying goodbye to your loved one
filled with sorrow when she died

I wish that things had been different
and that she didn’t have to leave
I wish most of all kind stranger
that you have comfort when you grieve

Posted in Awards

Wonderful Team Member Readership Award


wonderful team member readership award

I admit it openly and honestly – I LOVE getting awards.  I think that deep down we all crave recognition, acceptance and love.  I have found this on Word Press.  I have met WONDERFUL people who have loved and supported me for the past year.   It is a very powerful thing to be recognised by a blogger I find not only incredibly inspirational, but funny and thought-provoking too.

Shaun from Praying for One Day awarded me the Wonderful Team Membership Readership Award,which of course I graciously accepted.  Shaun is one of my favourite bloggers who has become a wonderful friend. The first post of mine that Shaun ever read was https://tersiaburger.com/2013/01/25/vic-has-left-home-for-the-last-time/  Sometime later Shaun wrote me an email or a comment, I am unsure which it was…He wrote that after he read my post he and his partner Dawn cuddled and sat in silence for a long time weeping for Vic.  Shaun always leaves a comment, hug or word of encouragement.  Shaun has been awarded this award 6 or 7 times and with good reason.  He is a Wonderful Team Reader who truly deserves this award!

So here are the rules:

1. Display the logo on your page.

2. Finish the sentence: A great reader is…

A great reader is… someone who takes the time out of his/her busy life to read my ramblings of grief, leave a comment, hug, advice… A great reader is someone who reaches out from cyberspace and cries with me, laughs with me and cares for me.  A great reader is my wonderful WordPress friends!

 

3. Nominate 14 readers I appreciate.

  1. Uma Girish at http://grammarofgrief.wordpress.com/ for her helpful blog on grief and surviving loss
  2. http://wordsfallfrommyeyes.wordpress.com/ is about a mother’s love for her son
  3. http://verbalbanter.wordpress.com a wonderful blog about life and it’s irritations and frustrations.
  4. http://drbillwooten.com/ is a blog filled with good music and wisdom.  Bill you are a kind and gentle friend.  Thank you
  5. http://everyonehasastory.me is a blog of hope and despair, healing and pain.  Excellent read.
  6. http://throughthehealinglens.com  is about a bloggers battle with debilitating, chronic pain. 
  7. http://thedarkest13.wordpress.com/ is an intelligent blog filled with good values, friendships, pain and love. 
  8. http://barefootbaroness.org is one of my favourite blogs. BB is a charming, gentle woman who has magical writing skills.  She is an amazing friend.  Thank you BB
  9. http://idealisticrebel.wordpress.com/ – Rebel is amazing and takes on the world! A brave blogger who is a great friend.
  10. http://jmgoyder.com/ – My precious friend Julie who has so much pain and loss to work through. 
  11. http://picturesofsilverbyjanice.wordpress.com/category/sculptures-silver-art-jewelry/  Janice is the kindest person.  She makes beautiful jewellery and my Christmas Gifts will come out of her innovative jewellery pieces.  I am gifting the boys their Mommy’s fingerprint to wear around their necks – close to their hearts.
  12. http://valeriedavies.com/  A gutsy, wise lady who is a friend and an amazing writer. 
  13. http://walkingthroughpain.com/ writes about “invisible illness” such as RA/Lupus/ Fibromyalgia.  This is a brave blogger who knows and lives with chronic pain!  Please support and encourage her on this lonely journey. 
  14. Tracy Rydzy – http://ohwhatapain.wordpress.com is another brave warrior battling chronic pain.

4. Inform the readers with either comments or pingbacks.

These are just 14 of a long list of treasured blogger friends who are truly worthy of this award.  There are many, many other bloggers whom I treasure and who inspires and supports me in my grief journey.

Thank you to each and every one of my blogger friends!!

Posted in Awards

Interesting Blog Award


Interesting Blogger award

Big thank you to Shaun, you are a great friend and I happen to be Chairperson of your Fan Club!  Shaun at  http://prayingforoneday.wordpress.com/2013/04/25/interesting-blogger-award/  thank you for this amazing award.  It is my first too!

Award rules.

  1. Thank the person who nominated you
  2. List 5 random facts about yourself
  3. Nominate a minimum of 5 blogs for the award
  4. Ask the nominees 5 questions of your choice
  5. And finally, let them know you have nominated them

5 things about myself

1. I would like to be my friend if I could not be myself

2. I would love to visit Russia – mid winter.

3. I hope to retire in 4 years time

4. My favourite song is “Never Alone” by Jim Brickman and Lady Annabelle –

5. I love reality TV shows and Word Games

I now nominate 5 or more bloggers for this award 

1.    Uma Girish at http://grammarofgrief.wordpress.com/ for her helpful blog on grief and surviving loss

3.    http://verbalbanter.wordpress.com a wonderful blog about life and it’s irritations and frustrations.

4.    http://drbillwooten.com/ is a blog filled with good music and wisdom.  Bill you are a kind and gentle friend.  Thank you

 

6.    http://throughthehealinglens.com  is about a bloggers battle with debilitating, chronic pain. 

 

 

 

8.     http://untraveledroads.wordpress.com/a personal journal of coping with and transcending pain

 

  • 9.    http://geeton1.wordpress.com/ is an amazing blog  of two people, Toni and Gerry, who share a passion to stop Child Exploitation and to bring Missing Kids and Adults, back home safely.

 

10. http://barefootbaroness.org is one of my favourite blogs. BB is a charming, gentle woman who has been an amazing friend.  Thank you BB.

 5 questions for you all

1. Who would you like to be, if you could not be yourself.?

2. If you could visit ANY place on Earth, where would it be?

3. What is your favourite Movie?

4. What is your favourite Song?

5. Why did you start blogging?

Thank you once again Shaun.  You are a wonderful friend and blogger!!

 

Posted in Chronic Pain, Death, Death of a child, Family, Family Life, Grief, Osteogenesis Imperfecta, Palliative Care, Terminal Illness, Vicky Bruce

The Spoon Theory


Reblogged from http://barefootbaroness.org/2012/02/25/1343/.  I personally witnessed this theory in life with Vic…she lived the Spoon Theory every day.  Thank you BB!

A theory I live by, a theory that saves my life~ It’s also an incredible and thoughtful way to express to people in your world/life what having a chronic illness is like. They’ll get it much easier by relating to spoons of all things~

Thank you to the author of this piece Christine. You have helped me save so many relationships with people who just did not get it. If you have read this before Bravo, you are doing as much as you can to communicate what your life, days are like.

The Spoon Theory

My best friend and I were in the diner, talking. As usual, it was very late and we were eating French fries with gravy. Like normal girls our age, we spent a lot of time in the diner while in college, and most of the time we spent talking about boys, music or trivial things, that seemed very important at the time. We never got serious about anything in particular and spent most of our time laughing.

As I went to take some of my medicine with a snack as I usually did, she watched me with an awkward kind of stare, instead of continuing the conversation. She then asked me out of the blue what it felt like to have Lupus and be sick. I was shocked not only because she asked the random question, but also because I assumed she knew all there was to know about Lupus. She came to doctors with me, she saw me walk with a cane, and throw up in the bathroom. She had seen me cry in pain, what else was there to know?

I started to ramble on about pills, and aches and pains, but she kept pursuing, and didn’t seem satisfied with my answers. I was a little surprised as being my roommate in college and friend for years; I thought she already knew the medical definition of Lupus. Then she looked at me with a face every sick person knows well, the face of pure curiosity about something no one healthy can truly understand. She asked what it felt like, not physically, but what it felt like to be me, to be sick.

As I tried to gain my composure, I glanced around the table for help or guidance, or at least stall for time to think. I was trying to find the right words. How do I answer a question I never was able to answer for myself? How do I explain every detail of every day being effected, and give the emotions a sick person goes through with clarity. I could have given up, cracked a joke like I usually do, and changed the subject, but I remember thinking if I don’t try to explain this, how could I ever expect her to understand. If I can’t explain this to my best friend, how could I explain my world to anyone else? I had to at least try.

At that moment, The Spoon Theory was born. I quickly grabbed every spoon on the table; hell I grabbed spoons off of the other tables. I looked at her in the eyes and said “Here you go, you have Lupus”. She looked at me slightly confused, as anyone would when they are being handed a bouquet of spoons. The cold metal spoons clanked in my hands, as I grouped them together and shoved them into her hands. I explained that the difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn’t have to. The healthy have the luxury of a life without choices, a gift most people take for granted. Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects of their actions. So for my explanation, I used spoons to convey this point.

I wanted something for her to actually hold, for me to then take away, since most people who get sick feel a “loss” of a life they once knew. If I was in control of taking away the spoons, then she would know what it feels like to have someone or something else, in this case Lupus, being in control. She grabbed the spoons with excitement. She didn’t understand what I was doing, but she is always up for a good time, so I guess she thought I was cracking a joke of some kind like I usually do when talking about touchy topics. Little did she know how serious I would become? I asked her to count her spoons. She asked why, and I explained that when you are healthy you expect to have a never-ending supply of “spoons”. But when you have to now plan your day, you need to know exactly how many “spoons” you are starting with. It doesn’t guarantee that you might not lose some along the way, but at least it helps to know where you are starting. She counted out 12 spoons. She laughed and said she wanted more. I said no, and I knew right away that this little game would work, when she looked disappointed, and we hadn’t even started yet.

I’ve wanted more “spoons” for years and haven’t found a way yet to get more, why should she? I also told her to always be conscious of how many she had, and not to drop them because she can never forget she has Lupus. I asked her to list off the tasks of her day, including the most simple. As, she rattled off daily chores, or just fun things to do; I explained how each one would cost her a spoon. When she jumped right into getting ready for work as her first task of the morning, I cut her off and took away a spoon. I practically jumped down her throat. I said ” No! You don’t just get up. You have to crack open your eyes, and then realize you are late. You didn’t sleep well the night before. You have to crawl out of bed, and then you have to make your self something to eat before you can do anything else, because if you don’t, you can’t take your medicine, and if you don’t take your medicine you might as well give up all your spoons for today and tomorrow too.”

I quickly took away a spoon and she realized she hasn’t even gotten dressed yet. Showering cost her a spoon, just for washing her hair and shaving her legs. Reaching high and low that early in the morning could actually cost more than one spoon, but I figured I would give her a break; I didn’t want to scare her right away.

Getting dressed was worth another spoon. I stopped her and broke down every task to show her how every little detail needs to be thought about. You cannot simply just throw clothes on when you are sick. I explained that I have to see what clothes I can physically put on, if my hands hurt that day buttons are out of the question. If I have bruises that day, I need to wear long sleeves, and if I have a fever I need a sweater to stay warm and so on. If my hair is falling out I need to spend more time to look presentable, and then you need to factor in another 5 minutes for feeling badly that it took you 2 hours to do all this.

I think she was starting to understand when she theoretically didn’t even get to work, and she was left with 6 spoons. I then explained to her that she needed to choose the rest of her day wisely, since when your “spoons” are gone, they are gone.

Sometimes you can borrow against tomorrow’s “spoons”, but just think how hard tomorrow will be with less “spoons”. I also needed to explain that a person who is sick always lives with the looming thought that tomorrow may be the day that a cold comes, or an infection, or any number of things that could be very dangerous. So you do not want to run low on “spoons”, because you never know when you truly will need them. I didn’t want to depress her, but I needed to be realistic, and unfortunately being prepared for the worst is part of a real day for me.

We went through the rest of the day, and she slowly learned that skipping lunch would cost her a spoon, as well as standing on a train, or even typing at her computer too long. She was forced to make choices and think about things differently. Hypothetically, she had to choose not to run errands, so that she could eat dinner that night. When we got to the end of her pretend day, she said she was hungry.

I summarized that she had to eat dinner but she only had one spoon left. If she cooked, she wouldn’t have enough energy to clean the pots. If she went out for dinner, she might be too tired to drive home safely.

Then I also explained, that I didn’t even bother to add into this game, that she was so nauseous, that cooking was probably out of the question anyway. So she decided to make soup, it was easy. I then said it is only 7pm, you have the rest of the night but maybe end up with one spoon, so you can do something fun, or clean your apartment, or do chores, but you can’t do it all.

I rarely see her emotional, so when I saw her upset I knew maybe I was getting through to her. I didn’t want my friend to be upset, but at the same time I was happy to think finally maybe someone understood me a little bit. She had tears in her eyes and asked quietly “Christine, How do you do it? Do you really do this everyday?” I explained that some days were worse than others; some days I have more spoons than most. But I can never make it go away and I can’t forget about it, I always have to think about it. I handed her a spoon I had been holding in reserve. I said simply, “I have learned to live life with an extra spoon in my pocket, in reserve. You need to always be prepared”

Its hard, the hardest thing I ever had to learn is to slow down, and not do everything. I fight this to this day. I hate feeling left out, having to choose to stay home, or to not get things done that I want to. I wanted her to feel that frustration. I wanted her to understand, that everything everyone else does comes so easy, but for me it is one hundred little jobs in one. I need to think about the weather, my temperature that day, and the whole day’s plans before I can attack any one given thing. When other people can simply do things, I have to attack it and make a plan like I am strategizing a war.

It is in that lifestyle, the difference between being sick and healthy. It is the beautiful ability to not think and just do. I miss that freedom. I miss never having to count “spoons”. After we were emotional and talked about this for a little while longer, I sensed she was sad. Maybe she finally understood. Maybe she realized that she never could truly and honestly say she understands. But at least now she might not complain so much when I can’t go out for dinner some nights, or when I never seem to make it to her house and she always has to drive to mine.

I gave her a hug when we walked out of the diner. I had the one spoon in my hand and I said “Don’t worry. I see this as a blessing. I have been forced to think about everything I do. Do you know how many spoons people waste everyday? I don’t have room for wasted time, or wasted “spoons” and I chose to spend this time with you.”

Ever since this night, I have used the spoon theory to explain my life to many people. In fact, my family and friends refer to spoons all the time. It has been a code word for what I can and cannot do. Once people understand the spoon theory they seem to understand me better, but I also think they live their life a little differently too. I think it isn’t just good for understanding Lupus, but anyone dealing with any disability or illness.

Hopefully, they don’t take so much for granted or their life in general. I give a piece of myself, in every sense of the word when I do anything. It has become an inside joke. I have become famous for saying to people jokingly that they should feel special when I spend time with them, because they have one of my “spoons”.

© 2003 by Christine Miserandino Butyoudontlooksick.com

 

Posted in Death, Death of a child, Family, Grief, Terminal Illness, Vicky Bruce

29 days – Promises Kept


My beautiful Angle Child

Today it was 29 long miserable days since you stopped breathing.

I have continued to breathe, walk, talk, eat, drink tea; I have attended meetings, cried and even laughed.  My life has continued yet part of me is dead.  I have lost my words today.  I just want to have a cup of tea with you.  I want to tell you how much I love you and how much I miss you.

Promises Kept

I’ve kept my promise,
of what I would do.
To continue to live,
my life without you.

I get up each morning,
I get through the day
struggling past tears,
every step of the way.

I go on with life with,
a forced happy face.
My heart aches badly,
for what I can’t replace.

I don’t know what to do,
to deaden this pain
It’s so hard, here without you,
where I must remain.

But I will keep my promise
and I must believe,
That you’ll be there waiting,
when it’s my time to leave.
-unknown

 

Posted in Chronic Pain, Daily Post 2012, Family Life, Grief, Palliative Care, Religion in my world, Terminal Illness, Vicky Bruce

“Next year my mom and I are going to Italy”


DSC00053

Sue saw Vic this morning.   Her liver is very distended and exerting pressure on the right lung.   I now have to use her little arms and legs as injection sites.  I HATE injecting her in the legs.  The doctor fears that she will develop abscesses on her bum.  The entire derriere area is full of lumps and bruises.  When I inject her the injection site becomes “lemon-peely”.  The immediate area swells and becomes hard.  Sometimes there is a fair amount of bleeding or serum loss.  Her tissue is POOR!!!

I discussed various central line options with Sue.  Vic refused point-blank to even consider it.  Vic has been mainlined so many times.  She always asked the anaesthetists to not tape her hair to the central line….  Vic went into septic shock from a CVV, had the needle inserted into an accessory vein and had to be returned to theatre for the removal of the needle and the cauterization of the puncture wound in the vein….  Due to her poor tissue and bleeding tendencies it took two hours!

So we discussed the way forward.

Sue gave us a script for Pethidine.  We will alternate the morphine and Pethidine six-hourly.  The poor pharmacist….  She went into shock when she heard that the morphine is NOT being replaced by the Pethidine… that it is in addition to the morphine.

Now it is only a matter of time.  Vic’s organs are slowly shutting down.  My child is gently being eased into death.

The entire day it echoed through my mind “we cannot stop this.  It is happening”

Vic is calm and serene.

“Next year my mom and I are going to Italy” she told Sue today.

“Then I can die…”

“We will find a way my love” Sue said…

“It is closer that she realises” Sue said to me at her car

Do I tell her?” I asked

“No, her body will…” Sue said

I cannot bear the thought of living without Vic.

 

Posted in Chronic Pain, Daily Post 2012, Family Life, Grief, Palliative Care, Terminal Illness, Uncategorized, Vicky Bruce

Where to now?


IMG_7374

The subcutaneous driver is down.  By this morning it was obvious that Vic’s tissue was just not holding up. 

On Friday morning I removed and repositioned the driver.  Serum leaked out of the syringe hole for almost two days.  The area is inflamed, hot to the touch, swollen and painful.  Cellulitis has struck!  Yesterday evening I repositioned the driver again and this afternoon I removed it.  So I will now administer the 150mg of morphine and  the 60 ml Stemitil IM.  Vic’s derriere is black and blue and lumpy from the injections. 

Where to from here?  How are we going to control this poor child’s pain?  I can only think that they will have to fit a central line…  Will they do it?  She will have to go into theatre for that!  There is absolutely no way I would allow the procedure without sedation!  Central lines are very susceptible to infection and sepsis.  

Poor baby.  She is so ill.

Today I said to my BFF, Gillian, that it is almost as if, now the decision has been made regarding “her” Hospice, she is at peace.  I sat next to her and thought to myself “I wonder if she will make Christmas?”  But then I thought to myself “Wait a minute…This is Vic…She bounces back!”

Tomorrow her doctor will come and see her, she will go onto a course of antibiotics and bounce back again.  Then we will decide how to deal with her pain…

Central venous catheter   http://en.wikipedia.org/wiki/Central_venous_catheter

 

From Wikipedia, the free encyclopedia
Central venous catheter
Intervention
MeSH D002405

Central line equipment

CVC with three lumens

In medicine, a central venous catheter (“central line”, “CVC”, “central venous line” or “central venous access catheter”) is acatheter placed into a large vein in the neck (internal jugular vein), chest (subclavian vein or axillary vein) or groin (femoral vein). It is used to administer medication or fluids, obtain blood tests (specifically the “mixed venous oxygen saturation”), and directly obtain cardiovascular measurements such as the central venous pressure.

Contents

[hide]

Types

There are several types of central venous catheters:[1]

Non-tunneled vs. tunneled catheters

Non-tunneled catheters are fixed in place at the site of insertion, with the catheter and attachments protruding directly. Commonly used non-tunneled catheters include Quinton catheters.

Tunneled catheters are passed under the skin from the insertion site to a separate exit site, where the catheter and its attachments emerge from underneath the skin. The exit site is typically located in the chest, making the access ports less visible than if they were to directly protrude from the neck. Passing the catheter under the skin helps to prevent infection and provides stability. Commonly used tunneled catheters include Hickman catheters and Groshong catheters.

Implanted port

port is similar to a tunneled catheter but is left entirely under the skin. Medicines are injected through the skin into the catheter. Some implanted ports contain a small reservoir that can be refilled in the same way. After being filled, the reservoir slowly releases the medicine into the bloodstream. An implanted port is less obvious than a tunneled catheter and requires very little daily care. It has less impact on a person’s activities than a PICC line or a tunneled catheter. Surgically implanted infusion ports are placed below the clavicle (infraclavicular fossa), with the catheter threaded into the right atrium through large vein. Once implanted, the port is accessed via non-coring “Huber” needles inserted through the skin. The health care provider may need to use topical anesthetic prior to accessing port. Ports can be used for medications, chemotherapy, TPN, and blood. As compared to CVC or PICC catheters, ports are easy to maintain for home-based therapy.

Ports are typically used on patients requiring only occasional venous access over a long duration course of therapy. Since the port must be accessed using a needle, if venous access is required on a frequent basis a catheter having external access is more commonly used.

PICC line

A peripherally inserted central catheter, or PICC line (pronounced “pick”), is a central venous catheter inserted into a vein in the arm rather than a vein in the neck or chest.

Technical description

Triluminal catheter

Depending on its use, the catheter is monoluminal, biluminal or triluminal, dependent on the actual number of lumens (1, 2 and 3 respectively). Some catheters have 4 or 5 lumens, depending on the reason for their use.

The catheter is usually held in place by an adhesive dressing, suture, or staple which is covered by an occlusive dressing. Regular flushing with saline or a heparin-containing solution keeps the line patent and prevents thrombosis. Certain lines are impregnated with antibiotics, silver-containing substances (specifically silver sulfadiazine) and/or chlorhexidine to reduce infection risk.

Specific types of long-term central lines are the Hickman catheters, which require clamps to make sure the valve is closed, and Groshong catheters, which have a valve that opens as fluid is withdrawn or infused and remains closed when not in use. Hickman lines also have a “cuff” under the skin, to prevent bacterial migration[citation needed] and to cause tissue ingrowth into the device for long term securement.

Indications and uses

Indications for the use of central lines include:[2]

Central venous catheters usually remain in place for a longer period of time than other venous access devices, especially when the reason for their use is longstanding (such as total parenteral nutrition in a chronically ill patient). For such indications, a Hickman line, a PICC line or a portacath may be considered because of their smaller infection risk. Sterile technique is highly important here, as a line may serve as a porte d’entrée (place of entry) for pathogenic organisms, and the line itself may become infected with organisms such as Staphylococcus aureus and coagulase-negative Staphylococci.[citation needed]

Triple lumen in jugular vein

Chest x-ray with catheter in the right subclavian vein

The skin is cleaned, and local anesthetic applied if required. The location of the vein is then identified by landmarks or with the use of a small ultrasound device. A hollow needle is advanced through the skin until blood is aspirated; the color of the blood and the rate of its flow help distinguish it from arterial blood (suggesting that an artery has been accidentally punctured), although this method is inaccurate.[citation needed] Ultrasound probably now represents the gold standard for central venous access and skills, within North American and Europe, with landmark techniques are diminishing.[3][4]

The line is then inserted using the Seldinger technique: a blunt guidewire is passed through the needle, then the needle is removed. A dilating device may be passed over the guidewire to slightly enlarge the tract. Finally, the central line itself is then passed over the guidewire, which is then removed. All the lumens of the line are aspirated (to ensure that they are all positioned inside the vein) and flushed.[citation needed] A chest X-ray is typically performed afterwards to confirm that the line is positioned inside the superior vena cava and, in the case of insertion through the subclavian vein, that no pneumothorax was caused as a side effect. Vascular positioning systems can also be used to verify tip placement during insertion without the need to a chest X-ray, but this technique is not yet a standard of practice.

Videos are available demonstrating placement of a central venous catheter without[5] and with ultrasound guidance.[6]

Complications

Central line insertion may cause a number of complications. The benefit expected from their use therefore needs to outweigh the risk of those complications.

Pneumothorax

Pneumothorax (for central lines placed in the chest); the incidence is thought to be higher with subclavian vein catheterization. In catheterization of the internal jugular vein, the risk of pneumothorax can be minimized by the use of ultrasound guidance. For experienced clinicians, theincidence of pneumothorax is about 1.5-3.1%. Some official bodies, e.g. the National Institute for Health and Clinical Excellence (UK), recommend the routine use of ultrasonography to minimize complications.[7]

Central-Line Associated Bloodstream Infections (CLABSIs)

All catheters can introduce bacteria into the bloodstream, but CVCs are known for occasionally causing Staphylococcus aureus andStaphylococcus epidermidis sepsis. The problem of central line-associated bloodstream infections (CLABSI) has gained increasing attention in recent years. They cause a great deal of morbidity and deaths, and increase health care costs. Historically, a small number of CVC infections were considered an acceptable risk of placing central lines. However, the seminal work by Dr. Peter Pronovost at Johns Hopkins Hospital turned that perspective on its head. Additionally, the Institute for Healthcare Improvement (IHI) has done a tremendous amount of work in improving hospitals’ focus on central line-associated bloodstream infections (CLABSI), and is working to decrease the incidence of this particular complication among US hospitals.

The National Patient Safety Goals NPSGs and specifically NSPG 7.04 address how to decrease infections.[8] The NSPG 7.04 has 13 elements of performance to decrease CLABSIs.

The 13 Elements of Performance (EPs):

  • EP 1 & 2 deal with educating staff and patients about Central Vascular Catheters and their potential complications
  • EP 3 specifically directs facilities to implement policies and practices to reduce CLABSI
  • EP 4 & 5 are about how to perform surveillance for Central-Line Associated Bloodstream Infections (CLABSIs)
  • EP 6-13:

– Institute for Healthcare Improvement (IHI) bundle

  • 1. Hand Hygiene
  • 2. Full body drape
  • 3. Chlorhexidine gluconate skin anti-septic
  • 4. Selection of Optimal site for Central venus Catheter (CVC)
  • 5. Daily review of ongoing need for CVC

– Disinfection of intravenous access ports before use

National Patient Safety Goals require documentation of a checklist for CVC insertion and Disinfection of intravenous (IV) access ports before use (scrub the hub). Some literature has suggested the use of a safer vascular access route – such as intraosseous (IO) vascular access – when central lines are not absolutely necessary (such as when central lines are being placed solely for vascular access). Infection risks were initially thought to be less in jugular lines, but this only seems to be the case if the patient is obese.[9]

If a patient with a central line develops signs of infection, blood cultures are taken from both the catheter and from a vein elsewhere in the body. If the culture from the central line grows bacteria much earlier (>2 hours) than the other site, the line is the likely source of the infection. Quantitative blood culture is even more accurate, but this is not widely available.[10]

Generally, antibiotics are used, and occasionally the catheter will have to be removed. In the case of bacteremia from Staphylococcus aureus, removing the catheter without administering antibiotics is not adequate as 38% of such patients may still develop endocarditis.[11]

In a clinical practice guideline, the American Centers for Disease Control and Prevention recommends against routine culturing of central venous lines upon their removal.[12]The guideline makes a number of further recommendations to prevent line infections.[12]

To prevent infection, stringent cleaning of the catheter insertion site is advised. Povidone-iodine solution is often used for such cleaning, but chlorhexidine appears to be twice as effective as iodine.[13] Routine replacement of lines makes no difference in preventing infection.[14]

Thrombosis

CVCs are a risk factor for forming venous thrombosis[15] including upper extremity deep vein thrombosis.[16]

Other complications

Rarely, small amounts of air are sucked into the vein as a result of the negative Intra-thoracic pressure and insertion technique. Valved insertion devices can reduce this risk.[citation needed] If these air bubbles obstruct blood vessels, this is known as an air embolism.

Hemorrhage (bleeding) and formation of a hematoma (bruise) is slightly more common in jugular venous lines than in others.[9]

Arrhythmias may occur during the insertion process when the wire comes in contact with the endocardium. It typically resolved when the wire is pulled back.[citation needed]

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Posted in Chronic Pain, Daily Post 2012, Grief, Palliative Care, Terminal Illness, Uncategorized, Vicky Bruce

The Liver….


 The liver works with the endocrine system to regulate nutrients in the body and remove toxins. An enlarged liver means that it is endangered due to disease or other factors, which can lead to toxic shock. The proper medical term for an enlarged liver is hepatomegaly.

A healthy liver helps fight infections and filters toxins from the blood. It also helps to digest food, store nutrients for future needs, manufactures protein, bile and blood-clotting factors and metabolizes medications. A healthy liver has the ability to grow back, or regenerate, when it is damaged. Anything that prevents the liver from performing these functions – or from growing back after injury – can severely impact health and very possibly length of life.

What Are the Symptoms of Liver Failure?

The initial symptoms of liver failure are often ones that can be due to any number or conditions. Because of this, liver failure may be initially difficult to diagnose. Early symptoms include:

  • Nausea
  • Loss of appetite
  • Fatigue
  • Diarrhea

However, as liver failure progresses, the symptoms become more serious, requiring urgent care. These symptoms include:

  • Jaundice
  • Bleeding easily
  • Swollen abdomen
  • Mental disorientation or confusion (known as hepatic encephalopathy)
  • Sleepiness
  • Coma

http://www.webmd.com/digestive-disorders/digestive-diseases-liver-failure

Causes

Fatty or enlarged livers are caused by infections, certain medications, general toxicity, hepatitis, autoimmune disorders, metabolic syndrome and genetic disorders that affect the liver. Abnormal growths, such as cysts or tumors, impact liver size. Blood-flow symptoms, such as heart failure, can cause liver enlargement. Conditions also exist that restrict blood to the liver veins, such as hepatic vein thrombosis.

An enlarged liver indicates a problem with the liver itself or your overall endocrine system. If you suspect that you have any of these symptoms, you should seek medical attention. The causes of an enlarged liver vary in their severity and complexity. Only a medical professional can make the proper diagnosis for the cause of an enlarged liver.

Read more: http://www.webdiagnosis.com/causes-of-an-enlarged-liver#ixzz2CzDrLFH2

If not addressed and stopped in the earlier stages, the damage resulting from these multiple causes leads to scarring of the liver, known as cirrhosis, where large portions of the organ begin to lose their capacity to function or regenerate.

Treatment of patients with liver failure is specific to the unique symptoms and conditions experienced by each individual. Any patient with liver damage will be asked to abstain from alcohol. For patients with cirrhosis and end-stage liver disease, medications may be required to control the amount of protein absorbed in the diet. If there has been a build-up of toxins, particularly high ammonia levels, medication will be offered which lowers these levels. Low sodium diet and water pills (diuretics) may be required to minimize water retention. In those with large amounts of ascites fluid, the excess fluid may have to be occasionally removed with a needle and syringe (paracentesis). Using local anesthetic, a needle is inserted through the abdominal wall and the fluid withdrawn. Sometimes surgery is performed to minimize portal hypertension and lower the risk of gastroesophageal bleeding.

At this point, a person may become a candidate for liver transplant of part or all of the liver. Transplant success has improved in recent years with 1-year patient survival rates of up to 87%.  Due to the severe organ shortages, patients who are listed for liver transplantation have an estimated wait time of 1 to 3 years, depending on blood type and illness severity. Many patients are never able to be considered for transplants due to severity of their disease, other medical problems, or social considerations such as ongoing alcohol use or non-compliance with treatment recommendations. Others die while waiting for a transplant as their disease continues to progress.

The impact of these various symptoms and conditions on suffering and quality of life are profound, and ESLD patients can benefit greatly from hospice and palliative care. Even, when an ESLD patient is on a transplant list, this does not automatically prevent them from being on hospice services.

According to Medicare/Hospice  guidelines, patients will be considered to be in the terminal stage of liver disease (life expectancy of six months or less) and eligible for hospice care, if they meet the following criteria (1 and 2 must be present; factors from 3 will lend supporting documentation):

1. The patient should show both a and b:
a. Prothrombin time prolonged more than 5 seconds over control, or International Normalized Ratio (INR)> 1.5
b. Serum albumin <2.5 gm/d1

2. End stage liver disease is present and the patient shows at least one of the following:
a. ascites, refractory to treatment or patient non-compliant
b. spontaneous bacterial peritonitis
c. hepatorenal syndrome (elevated creatinine and BUN with oliguria (<400ml/day) and urine sodium concentration <10 mEq/l)
d. hepatic encephalopathy, refractory to treatment, or patient non-complaint
e. recurrent variceal bleeding, despite intensive therapy

3. Documentation of the following factors will support eligibility for hospice care:
a. progressive malnutrition
b. muscle wasting with reduced strength and endurance
c. continued active alcoholism (> 80 gm ethanol/day)
d. hepatocellular carcinoma
e. HBsAg (Hepatitis B) positivity
f. hepatitis C refractory to interferon treatment

http://www.hospiceofthecomforter.org/en/post/medical-perspective/understanding-endstage-liver-disease

 

Posted in Vicky Bruce

What gives life will hasten death


Courtesy of: http://www.flickr.com/photos/violetteultracore/7442358584/lightbox/

 

I am so tired.  I think it is emotional more than physical.

Vic went to the movies with her friend Tracey today.  As she wanted to leave, Hospice arrived.  Sr Siza was VERY dubious whether she should go…  Anyway the boys went with to make sure she was okay.  They are so protective of her.

When Tracey dropped her at home she was so tired she could not lift her feet.  She immediately got into bed and I know it will take days for her to recover.  I am grateful that she enjoyed the movie.  I cannot believe my child went and saw The Twilight Saga Breaking Dawn Part 2!!  She is the most anti-vampire person I know!

She said “Oh Mommy, the one part was scary but it was so much fun!”

I have read up on the effects of continued morphine administration when someone is in Renal and Liver Failure.  We have no option but to continue the pain medication regime… It will help her live and yet it will certainly contribute even hasten her death.

I don’t care.  I want Vic to be as pain-free as possible.  It is becoming increasingly difficult to do so.  She is literally on a “morphine on demand” regime.  She cannot overdose – she is too used to Morphine.  The dosages have been titrated over many years…

It will be a difficult night.

 

 

Posted in Chronic Pain, Daily Post 2012, Family, Family Life, Grief, Palliative Care, Terminal Illness, Uncategorized, Vicky Bruce

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.

 

 

 

 

Posted in Chronic Pain, Daily Post 2012, Family, Family Life, Grief, Palliative Care, Terminal Illness, Uncategorized, Vicky Bruce

Endometriosis, abdominal surgery, fistula and adhesions…..


Vic has had 81 abdominal surgeries in her life.  Vic’s first abdominal operation was at the age of 10 when she had her first batch of endometrioses surgically removed.

Endometriosis is a gynecological medical condition in which cells from the lining of the uterus (endometrium) appear and flourish outside the uterine cavity, most commonly on the peritoneum which lines the abdominal cavity. The uterine cavity is lined with endometrial cells, which are under the influence of female hormones.

Endometriosis is typically seen during the reproductive years and it has been estimated that endometriosis occurs in roughly 6–10% of women.

About 93%–100% of people undergoing abdominal or pelvic surgery will form adhesions, but luckily most do not have complications of the adhesions.  Adhesions may also result from infectious processes, such as pelvic inflammatory disease.

Abdominal adhesions are bands of fibrous scar tissue that form on organs in the abdomen, causing the organs to stick to one another or to the wall of the abdomen. Scar tissue most commonly develops after abdominal surgery, in which organs are handled by the surgical team and are shifted temporarily from their normal positions. It can also form in people who develop peritonitis, an infection that has spread to the membrane that covers the abdominal organs. Vic has developed peritonitis on numerous occasions.  Peritonitis usually occurs after appendicitis or another abdominal infection such as Vic first developed after her blotched surgery when her small bowel was perforated.  https://tersiaburger.com/2012/10/19/the-albatross/

There is no way to prevent adhesions. Abdominal adhesions can be treated, but they can be a recurring problem. Because surgery is both the cause and the treatment, the problem can keep returning. For example, when surgery is done to remove an intestinal obstruction caused by adhesions, adhesions form again and creates a new obstruction in 11% to 21% of cases.  http://www.intelihealth.com/IH/ihtPrint/WSIHW000/9339/9394.html?hide=t&k=basePrint#prognosis

Fibrous Bands of Adhesion – Bowel obstruction

In most patients, adhesions do not cause health problems. In a small number of people, like Vic, the fibrous bands of scar tissue block the intestines either completely or partially. This blockage is called a bowel obstruction, and it leads to death in about 5% of cases. Sometimes, an area of intestine that is affected by adhesions can keep becoming blocked then unblocked, causing symptoms to come and go. In about 10% of small-bowel obstructions, a portion of the bowel twists tightly around a band of adhesions. This cuts off the normal blood supply to the twisted bowel, causing what is called strangulation, and that section of bowel begins to die. When this emergency happens, the person must be taken to surgery immediately. The death rate is as high as 37% in people who develop strangulation.

Literally meters, of different parts of Vic’s intestines, has been removed.  Every time Vic had an obstruction she had surgery.  Vic has needed skin grafts to cover open wounds.  Vic developed numerous gastrointestinal fistulas.  Due to the extremely thin layer of skin covering her intestines the intestines have chaffed through.  Vic would lose up to 7 liters of feces  per day, through the fistula.

Now we cope with partial obstructions on a weekly basis.  We battle with poor absorption because Vic has lost critical parts of her intestines.  Vic will not have further surgery.  My child has been to hell and back.

No more surgery.

Ready for theater….again…..