We need a miracle again….


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 will “host” our Hospice at their premises.

The CEO knows Vicky and the boys.  Jared was confirmed in his church earlier this year.

I shared with them how difficult it was to get a terminally ill person into a Hospice Program and that 95% of the dying population die in pain.  Vernon (CEO) quietly listened to us and explained how difficult fundraising is.  Christians are tight with their money…

Vernon then shared the following with us.

“In 2007 I was driving home from a meeting when I felt this urgent need to see Vicky.  I knew she was in hospital as she was on the prayer list.  I drove to the Donald Gordon (Hospital) and was directed to the ICU.  The nurses welcomed me although it was way past visiting time.”

“Pray for her.  We are switching the machines off tomorrow morning…” they said.

I stood next to her bed, raised my arms and prayed that God would spare Vicky for her little boys.  I stood next to a dead person that night.  Two days later I heard that Vicky did not die when the machines were turned off…”

I just stared at him.  I was speechless…  I had no idea!   It was the first time I had ever heard the story!

In June 2007 Vic had developed ARDS (Acute Respiratory Distress Syndrome) after a series of operations trying to close up an abdominal fistula.  Her body was excreting up to 7 litres of faecal matter a day and she had every superbug the ICU could offer.  On the Tuesday Vic went into respiratory failure and was ventilated.  I was talking to her when the doctors rushed us out of ICU and put her onto the ventilator.  By the Thursday her kidneys and liver had started shutting down.

ARDS is a severe lung syndrome (not a disease) caused by a variety of direct and indirect issues. It is characterized by inflammation of the lung parenchyma leading to impaired gas exchange with concomitant systemic release of inflammatory mediators causing inflammation, hypoxemia and frequently resulting in multiple organ failure. This condition is often fatal, usually requiring mechanical and admission to an intensive care unit.   http://en.wikipedia.org/wiki/Acute_respiratory_distress_syndrome

My BFF, Gillian drove 350 kilometres to be with me.  On the Thursday there was absolutely no sign that Vic could or would recover.  Vic had a DNR and a living will that she had provided the hospital.

That evening one of the ICU doctors, Liam, hugged me and said “Mommy, Vic is tired.  You must let her go…”

Gill, Leeann (Vic’s friend) and I went home after visiting hour to talk to the boys.  They were already in bed when we arrived home.  We sat with them

Guys, you know how ill Mommy has been….Mommy’s lungs are not able to work on their own.  Mommy’s kidneys and liver is also not working that well anymore.  The doctors feel that Mommy will not be able to breathe without the machines and that Mommy has suffered too much.  They think it will be better for Mommy to be taken off the machines…”

Jared quietly started to cry.  Jon-Daniel was stoic.  Jared was 10 years old and Jon-Daniel 8 years old.

“What will happen with us Oumie” Jon-Daniel asked.

“Sweetie, Oumie and Oupie will ALWAYS be here for you.  This is your home.”

Jared cried himself to sleep.  Jon-Daniel just clung to me.  The three of us shared a bed that night.

The next morning early Gill, Lee and I set off to hospital.  When we arrived I said “I am not going into that hospital until I have prayed in the Chapel.”

The three of us prayed and it was with absolute certainty that I KNEW Vic would not die that day.

Family and friends drifted in and out of the waiting room the whole day.  My minister came and prayed for my child.  Everyone said goodbye.

That afternoon Danie and I were allowed to see Vic.  The “invasive” ventilator had been disconnected and she had a mask-like ventilator covering her face.  It was a grotesque sight.

Danie held her little hand and his tears dripped onto her arm.

Oh sweetie” he said, the sorrow and pain raw in his voice.

Vic opened her eyes and said “Daddy”….

Three days later Vic was discharged from ICU….. It was not her time.

Today I looked at her and fear struck at my heart.  My child is slowly slipping away.  Her little body is tired of the pain.  Her little organs are enlarged and diseased.  Her bones weak….

And the realisation hit home…. We need another miracle.

God please have mercy on my child.

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.

 

 

An end of life discussion is one of the most important things to do right


Vic July 2007

This is a subject very dear to my heart.  Vic has been saved from the claws of death so many times in her little life.  I often lie in bed thinking how much physical pain and discomfort I have imposed on Vic by not allowing the doctors to not give up.  By cajoling her into living.  Twice this week I begged her to allow me to take her to hospital.  I promised earlier this year that I would respect her wishes. https://tersiaburger.com/2012/05/18/6-5-2012-3/   

My BFF, Gillian, sent me this email message:

Morning, you summed up “Where did the time go” perfectly. I cannot believe that 8 years have passed so quickly. Jon Daniel was 7 and Dr said he would not understand about death, but Jared 9 would be able to comprehend and mourn. You wonder what is better……. When they are little or older. Vic our miracle child has hung in there for her Angels. She can only be commended on her will power to add another day to their lives. She has no life. Except to smile with sad eyes every time she sees the boys for another day. As hard as it is to nurse your child, you are also spared Another day good bad or ugly. God has sent Vic to us give each one a lesson – not to complain or give up – the Power of the mind. Be grateful for what we have body mind and soul. Love you all with all my heart

What Gillian wrote in her mail is so true.  If I had allowed Vic to die earlier she would of been saved incredible amounts of raw, undiluted suffering and indignity!  A couple of posts ago I wanted to include a photo of Vic’s abdomen so people could understand what a person looks like after 81 abdominal surgeries.  I decided against it as it is too horrific to post.  But we have been blessed with some wonderful times.  The boys are now old enough to understand the extent of her suffering.  At this stage I am focused on her pain.  I remember when I was stressed that she was taking a couple of hundred milligrams of morphine a week.  Now it is a couple of hundred per day…

Reblogged from http://www.kevinmd.com/blog/2012/11/life-discussion-important.html by  on November 11th, 2012 in PHYSICIAN.  I read this on Andrew’s blog  on http://lymphomajourney.wordpress.com/2012/11/15/an-end-of-life-discussion-is-one-of-the-most-important-to-do-right/

During an internal medicine residency, newly hatched doctors are responsible for some of the sickest patients in their teaching hospitals. This is because those patients often don’t have private doctors to attend them and are poor and sometimes self abusive, with the complex problems that go with smoking, drug and alcohol abuse and lack of regular medical care. These patients often present with their diseases late in game, when much must be done quickly.

There is little or no time to discuss end of life issues and so the assumption is made that these folks want “everything done” which includes machines and potions to support organs and bodily functions as they cease to work right. A scenario might look like this: 48 year old heroin abuser comes in with fever of 104 and symptoms of a stroke. He is admitted to the intensive care unit with low blood pressure, becomes gradually delirious and his heart rate increases, he is sedated for trying to crawl out of bed and run off, he becomes lethargic and is unable to breathe for himself, a central line is inserted and he is intubated and put on a ventilator, his blood pressure is supported with pressors and fluids, his oxygen level cannot be supported despite high ventilator settings. His kidneys cease to work and his heart goes into a rhythm that produces no blood pressure at all, he receives CPR with chest compressions, he is resuscitated, but barely alive, unable to communicate, obviously brain damaged beyond repair, placed on dialysis, eventually succumbs to overwhelming infection. We call this a “flail.”  It is horrifying and time consuming and ultimately a colossal waste of human and monetary resources. Repeated experiences of this type sour most of us on the idea of being resuscitated, so many doctors consider themselves “DNR (do not resuscitate).” We don’t want to be resuscitated ever, no matter what. There are some things that are worse than death.

Some resuscitations go well, though. A patient arrives in the emergency department with chest pain, develops an arrhythmia, has chest compressions briefly and electrical cardioversion and is conscious within minutes or hours. Some people briefly can’t support their own needs for respiration and require a few days of ventilation before being able to breathe adequately. Although they are weak and puny for awhile, they go home and live to tell the story, go back to work, raise families, climb mountains. These successes usually happen to people who were vital before they became really sick, the younger folks, without multiple or terminal illnesses to begin with.

When someone is admitted to the hospital, the physician responsible for their care (which is more and more often the hospitalist) determines, if possible what their wishes would be regarding life support should their breathing or heart stop. These discussions are very difficult if the patient has not thought about resuscitation and has not talked with a physician who knows them about options.

Often patients have reasonable hesitance to make potentially life determining decisions with a doctor who they don’t know and who doesn’t have time to talk with them about the implications of these decisions. In our heads we have a pretty good idea of which patients would do well should they require cardiopulmonary resuscitation, and we really want people whose chances of recovery are lousy to tell us that they are DNR. A DNR decision means that will not flail them. We will not get into a situation in which failure is likely. Should this patient become so sick that medicines, hydration and appropriate surgical procedures cannot save them, we will transition to a strategy that makes death peaceful and painless.

We rarely succeed in communicating this to patients and many who will not benefit from cardiopulmonary resuscitation say “Oh yes, doctor, I want everything done.” Some say this because their experiences are different from ours, they have seen doctor shows in which resuscitation was successful, they think that withholding resuscitation means getting substandard care, and sometimes they think that we just want to spare ourselves the trouble of saving them. And some of these concerns are valid. A patient who is “DNR” may not be watched as closely or treated as quickly if they decompensate. Some people with horrible prognoses do get better after being resuscitated, though this is pretty uncommon and usually involves a pretty significant decrement in quality of life.

Even though it is hard to establish trust with patients or their families in the context of being a hospitalist, I think it is one of the most important discussions to do right. It is everso tricky, though. Even asking the question can make a patient frightened or hostile. They wonder if we are asking this question because we secretly think they are going to die soon. They feel that the subject is too private to broach with a near stranger. They have never thought about it and don’t want to start now. They think that if they make a decision not to be resuscitated that their family members will think that they don’t love them.

But sometimes patients have been waiting, oh so patiently, for someone to bring up the subject and be willing to take enough time to answer the questions that they have been afraid to ask. I find that a discussion of resuscitation is best started after I learn about who a patient is and what they have done for a living and what they spend their time doing at home. What were they good at when they worked? Do they have kids or grandkids? Where do they live, do they travel, do art, take care of other people, have pets? It is hard or impossible to help a person navigate the end of life if I don’t know them.

Even though I am a bit biased against intensive and technological medical care, I love actually doing it. The tools of this trade are really clever and the immediacy of the practice is inspiring and brings people together. I have seen beautiful and compassionate intensive care, which makes patients and families feel valued. Nevertheless, there are always the unintentional and casual cruelties of disturbed sleep, needles, boredom, prickly heat, bowel indignities, physical pain and nausea. Death following chest compressions and electrical cardioversion is not peaceful.

When I sit with a person and hear that, no, they don’t want intensive care or cardiopulmonary resuscitation should their heart or lungs cease to work, and it is clear that resuscitation is not in their best interest, my heart feels lighter. I can focus more on what the patient values rather than what procedures are most likely to keep them alive for the longest time.

Janice Boughton is a physician who blogs at Why is American health care so expensive?

Hospice counseling….


We met with Alan, the Hospice counselor, today.

On our way to Hospice Jon-Daniel sat with his arms crossed muttering “I don’t need to see anyone” under his breath.  “I am like you Oumie.  We don’t talk…”

Yeah”  I said.  “But I really think the time has come for us to talk to someone.  Besides it is part of the Hospice thing.  We have to do it!”

The whole day I was thinking of shrink jokes” Jared said.  “Do you think I can ask him ‘how does this make you feel?‘”

We all laughed.

Guys if we don’t talk to the counselor we may have to come back…. Let’s answer all the questions and get it over and done with….” I cautioned

Alan is a short young man.  I think he is in his early thirty’s.  We shook hands and he asked us how we wanted to “do it?”

The boys went in on their own.  I sat in the waiting room saying a little prayer that they would open up to this professional stranger who is an expert in dealing with death.  Thirty minutes later I was invited in.

The boys tell me they are coping well.  They don’t see the reason for seeing me…..What do you think?  Are you guys coping?”

I was truly taken aback.  “Yes, I think we are coping.

So Tersia, why do you think the boys need to see me?”

I did not speak for a couple of minutes.  I was grappling with my brain as to how much I should tell this stranger.

I think the emotional roller coaster is getting to us.  We have said our goodbyes so many times and Vic always bounces back!” I eventually said.

“Yes, Jon-Daniel said so” Alan replied.

“I worry that the boys live in a home where death lingers.  There is not enough laughter in our home.  It saddens me when they stand next to their Mom’s bed and I see the helplessness in their eyes!” I mused

“I get impatient with Vic.  When she has half a breath she will organize a party.  When the pain medication works she will not pace herself.  She will hurt herself and  then I have to pick up the pieces.  Sometimes I am scared that her suffering will not end. ” I continued.

What type of party will she organize?” Alan asked.

The boys and I laughed!

“It is only a figure of speech….” we explained.  “She will try and do things with the boys and hurt herself.”

What type of things?” Alan asked

Drive and take us for a milkshake” Jared replied.

“Mom forgets things and she thinks we are all against her…  Yesterday she said to me that I must not feel guilty if she dies and I am cross with her…Mom always thinks we are fighting with her….” Jon-Daniel said.

It is not about the final moments.  It is not the final words or even the final disagreement.  It is about the life and all the years of loving before death and dying…. You must not ever blame yourself for anything.  Life is hard for all of you right now.  It is okay to be scared and to get irritated.  You must tell your Mom how you feel.  I am not saying you must back-chat.  What I am saying is that you must tell your Mom how her actions and illness makes you feel.  The household consists of more than one person…. You all have the right to living…”

The boys asked to see Alan for another session….  Thank you God for another angel!

 

Mommy, I thought I had more time….


“You matter because of who you are. You matter to the last moment of your life, and we will do all we can , not only to help you die peacefully, but also to live until you die.”

–Dame Cicely Saunders

Mommy, I thought I had more time…..

I am dying 9.7.2012


I am dying 9.7.2012.

Who is taking care of the caregiver? 5.7.2012


Who is taking care of the caregiver? 5.7.2012.