Tag: terminally ill

Vic Olympic Champion


Yesterday we did not see the GP for Vic’s arm – she was just too exhausted to get out of bed.

We arrived at the Urologist at 14:30 and low and behold he is at another practice in a different suburb.  The receptionist gets such a big fright because of the size of Jared’s kidney stones that within minutes she is busy arranging theatres for emergency surgery!  Eventually I got her to HEAR what I was saying – the kidney stones are not obstructing the urinary tract!  A new appointment is scheduled for Jared to see the Urologist on Monday.

We arrive home and the doggie parlor people had not picked up JD for her final pampering session.  Anyway she had a better night the previous night and all of a sudden I am doubting my decision about sending her to Doggy Heaven.  Maybe this is a sign that it is not her time!

With minutes to spare, just before I add garlic to dinner, my wonderful, caring friend Gillian arrives.  (Gill is allergic to garlic and 1000 other things…) Out of the blue with armloads of gifts…  A lavender plant and lavender hand cremes for me (to calm me down), rusks for Danie, chocolates for the boys and waterless Magnolia hand sanitizer and linen stray for Vic!  How precious is my friend?  She read my blog in the morning and decided that I need moral support!

So, egg on my blog face… JD is still walking around, Jared is in high spirits because he is not in theatre and after such a bad start Vic is having a good afternoon.  (The Jurnista is working so well!!!)

I was so happy to see my friend!!

Gill and I, over a cup of tea, are sitting discussing Jared’s situation when she asked “Who is his Urologist?”  I told her that it is Dr S; he is new in Alberton so we were able to get an appointment quickly… Gillian went white!   In her clipped manner of speech she declared “Over my dead body!  Do you know what he did to Sandra, (her sister-in-law)?  He left the plug in her when he did her bladder repair 6 weeks ago!  Sandra nearly died!”  Gill then proceeds to tell me that at Sandra’s book club meeting the girls were discussing Sandra’s operation.  Naturally the girls wanted to know who the surgeon was and guess who?  Yes, Dr S…  That apparently triggered two more of the ladies relating their stories of severe sepsis, after urology surgery, to their husbands and the urologist was…. Wait for it….. Dr S!!!!!

There is a God!  Imagine if Jared went into theatre yesterday and he was Case No 4 GONE WRONG???

I had just started writing this posting today when the phone rang and guess what?  Dr Y’s receptionist was on the line.  Dr wants to see Vic… With the speed of lightning I dressed Vic in a tracksuit and sped off to the Doctor’s rooms.  The receptionist nearly fainted when she saw Vic’s hand… After a couple of minutes she said if we had not lived close to the consulting rooms she would have told us to come in on Tuesday next week… she did not feel like working late and yesterday she cut down on the number of consults he was doing because she had stuff to do…!  Obviously her conscience got the better of her and she told him Vic had phoned.  He told her to get hold of Vic to see him today still…

The doctor was shocked when he saw how swollen Vicky’s hand is.  He took the cast off and the arm is extremely bruised and very, very sore.  We had a long discussion and the decision was made that there is no alternative but to operate.  Vic will check into the hospital at 08:00 tomorrow morning and he will operate at 10:00.

I am very concerned about the danger of sepsis.  Obviously Vic will go onto strong antibiotics but she already takes antibiotics every day of her life.  As a matter of fact she takes antibiotics twice a day, every day of her life.  She already has sepsis in the spine and abdomen.   I do however realize that there is no other option but to do the arthroplasty surgery.

I am however concerned that a silly little girl can decide how many patients a doctor can see a day not because of his time constraints but her nail appointment at the beauty parlor…  I am very concerned that a receptionist can play God and could cost my child her arm.  Yesterday it would have been a standard surgery but now it is emergency surgery that has to be performed on a Saturday morning.  What a country we live in!

What on earth can make a doctor appoint such an airhead in his practice?  We end up with a silly young woman who do not realize the importance of being able to distinguish between a patient needing to see a doctor urgently and her +*%&% nail appointment!

I have tried to Google “humerus + sepsis” but the articles I found were just too complicated for me to understand.  So, in faith, I will accompany Vic to hospital and try to get her through the post-op pain and onto the road to recovery.  I can only hope that she will not lose too much functionality

I am watching the opening of the 2012 Olympics and am filled with deep sadness for Vic and other people in similar situations to Vic’s.  Somebody else’s sons and daughters, the perfect athletes, competing for the top sports awards of the world….  Dreams will be realized or shattered.  There will be tears of joy and tears of heartbreak…

Vic has never been able or allowed to do any sport.  People of her age are still climbing the ladder to success.  Vic has never really worked or climbed the corporate ladder.  Vic’s life is over without it ever really started.  Vic literally only knows tears of pain and suffering.  However if there was an Olympics for pain, suffering and endurance, my child would take gold!!

Vicky Bruce, Champion of Champion in the Pain and Suffering Race!   All time winner of Survivor OI.

 

 

Relax, it’s just a bend, not the end!


Relax, it’s just a bend, not the end!.

Relax, it’s just a bend, not the end!


We are seeing a GP tomorrow morning regarding Vic’s arm.  Both her arm and hand are so swollen that I am concerned that she may actually lose her arm.  It has now been more than a month from the day that she fractured her arm.  When I bathed her tonight I removed part of the dressing that is protecting her arm.  Her arm is still black and blue and horrifically swollen.  I am convinced that she has pressure sores under the cast.

Today was a truly exciting day… (Relax, I am being facetious)

We phoned the Orthopod that treated Vic in hospital.  Sorry, he (Dr Y) can only see Vic next week!  We then phoned her original Orthopod (Dr V) with the permission of Dr Y.  Dr V’s receptionist informs us that Dr V will only see Vic with the written consent of Dr Y.  We tell her that Dr Y is too busy to write a letter but has advised us to get Dr V to phone him (Dr Y) if he needs to speak to him.  “We will not even allow you into Dr’s rooms without a letter.  Doctor V is too busy to phone.  Get a letter if it is so urgent for you to see Doctor!”

Well!!!  What the hell do you do?  You cannot force a receptionist to allow you to see a doctor.  Even if you force your way into the consulting rooms you cannot force a doctor to see you.

ImageImage

The fact that Vicky is terminal does not give any doctor permission to wash their hands off her.  It is written into our Constitution that every citizen of this beautiful country has the right to medical care!!  “In terms of South Africa’s constitution each person is entitled to human dignity, equality and freedom. This should also be the case when a patient receives medical treatment in the private and public sector.

The Government has an obligation to protect the life of every person in South Africa. The patient has the right to receive medical treatment.”

I promise anyone who cares to read this or hear me: if there is permanent damage to Vic’s arm, I will sue both doctors, regardless of her overall medical condition.

Tomorrow we will see Vic’s GP and hopefully she can get Vic into an Orthopod’s rooms!  Why only tomorrow?  She is too fully booked today to see us today…

Today I had a message from Dr Jaffer Hussain asking whether the Jurnista is working.  Not only did he care enough but he asked whether I wanted him to ask Prof Froehlich to motivate Hospice?

I received a message from my brother today that read:- Often when we lose hope and think this is the end, GOD smiles from above and says, “Relax, it’s just a bend, not the end!” 

Is there hope after all?  I am cautiously optimistic!

Tomorrow afternoon we see the Urologist.  Strangely I am at peace about Jared.  God cannot be that cruel so I trust in a positive outcome!

JD (Jared’s Dog), is 15 years old and suffering from 3rd degree congenital heart failure.  In human years JD is at least 105 dog years old. She has been such a healthy little dog but is now starting to battle.  She coughs throughout the night and end up sitting upright to breathe easier.  When I get home she is so excited that she has a coughing spell.

JD follows me where ever I go.  If I step back I step on her.  She sleeps in my room.  JD and I have a system worked out.  When I come out of the shower she is already waiting for me.  When I go downstairs, with her in tow, her little tail is wagging and she is clearly very excited to see what little snack she is going to have.  I know she is not supposed to have little snacks but heaven helps the person who tries to feed me hard, dry biscuits when I am 105 years old!

I do not want JD to suffer any further.  Tomorrow morning she will go to the parlour one final time.  In the afternoon she will have an injection at the vet and gently drift off to Doggie Heaven.  Vic and Jared want to go with her.

I am a coward.  I do not have the resilience and strength to take her.

Vic and JD watching a movie

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


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

Jurnista – hope or looming disaster? 19.7.2012


Jurnista – hope or looming disaster? 19.7.2012.

For some dying is hard work. 18.7.2012


Some people take their time and linger. Some people get it over with quickly. For some dying is hard work.  But all of us are heading towards the same destination. Passing through our physical stages of dying.  Into death…

via For some dying is hard work. 18.7.2012.

I am going to smile and make you think I am happy 17.7.2012


Image” I’m going to smile…and make you think I’m happy…I’m going to laugh…so you don’t see me cry…and even if it kills…I’m going to smile.”

I think seeing Vic trying to remain cheerful and to smile through her pain is almost harder than seeing the raw pain on her face.  I know Vic so well.  When her voice becomes shrill and loud she is suffering bravely. 

 ImageThe sad thing is that Vic thinks we cannot see through her act.  She especially tries this act with the boys.  She will try and joke (not that she ever had a great sense of humor) and tell long winded stories.  Long winded because I think she somehow loses the thread of the story along the road and fills in the blanks with words. 

 Even as a baby Vic used to babble.  She used to lie in her cot and ooch and gooch…She was such a happy little thing.  Laughed from her stomach.  When she turned ten she started experimenting with her sense of humor…It was quite painful.  She could never get the punch line right.  At 37 she still can’t get it right.

 With 80 operations under her belt Vic developed almost a manic fear for the theatre.  She got to know the theatre team very well.  Her anaesthetist, Richard Spark, is one of the greatest human beings I have ever met.  Brendon Bebington,  her surgeon, would hold her hand whilst Richard administered the anaesthetic. 

Vic always insisted on telling them a joke in theatre.  We would make her practice the joke for days!! Even in the holding area of the theatre we would make her repeat the joke…  We would laugh and clown about to try and take her mind off her fear.  Fear that she would not survive another operation and fear of the pain if she did… As they wheeled her into the theatre the tears would come… my tears.  I never cry in front of Vic. 

I wish I had written down the original joke and what Vic ended up telling…

 It is part of the burden of having a terminally ill child.  You fear tears because it may lead to breakdown. 

 Last night Jon-Daniel and Jared managed to have them mother shrieking with laughter.  I don’t know when last I heard them laugh like that. It was amazing.  For a short while the heavy cloud that hangs over our home lifted…

 Today is a very difficult day for Vic.  The cold is in her bones.  Pain is dominating her mind and life again! My brave child is battling.  Maybe tomorrow will be a better day.

Tips for dealing with people in pain 17.7.2012


Tips for dealing with people in pain 17.7.2012.

Tips for dealing with people in pain 17.7.2012


“Too often we underestimate the power of a touch, a smile, a kind word, a listening ear, an honest compliment, or the smallest act of caring, all of which have the potential to turn a life around.”  Leo Buscaglia

I am disgustingly healthy!  I do not get headaches, toe-aches, tummy aches, ear aches or any aches or pains.  Every five years or so I get the flu and am totally unable to deal with the discomfort or pain of flu…I will stay in bed and when I hear Danie walking up the stairs to our room I will actually start groaning.  It is involuntary.  I am a ninny.  My family joke with my non-existant pain threshold.  Yet I see the doctor once a year for an annual check-up as I did last week.

Liver, lungs, kidneys perfect according to my blood tests.  Slightly elevated cholesterol count.  Doctor says I am in near perfect health.  So how do I understand my child’s pain and discomfort?  I don’t!  If you were born blind how could you ever understand or appreciate color?

There is a very brave young lady called Katie Mitchell, who suffers from Marfan’s Syndrome.  http://connectivetissuedisorders.wordpress.com  Katie gives me an insight into pain… She articulates her feelings beautifully.  Katie lives, breathes and understands pain… Katie has become my window into Vic’s painful journey…Katie re-posted a blog on pain and I found it so enlightening.  I will actually print the document and discuss it with the family.

Katie writes in red and my comments are in black:

Tips for dealing with people in pain:

1. People with chronic pain seem unreliable (we can’t count on ourselves). When feeling better we promise things (and mean it); when in serious pain, we may not even show up. Vic is always trying to go to breakfast with Angela, lunch with Mrs Cramp and coffee with Tracey.  Vic very seldom is able to stick to a commitment.  It fills her with remorse.  She desperately wants some normality in her life.  Some semblance of a social life.  Pain and ill-health prevent it!

2. An action or situation may result in pain several hours later, or even the next day. Delayed pain is confusing to people who have never experienced it.  Oh this I truly relate to…Vic sitting in the sun and crashing later, Vic trying to participate in a family barbecue and spending a week in bed to recover… Every action has a painful consequence!  As a family we dread Vic’s brave (but stupid as far as we are concerned) attempts of participating in life.  As a family we become angry, frustrated and scared when Vic tries to “live”!

3.  Pain can inhibit listening and other communication skills. It’s like having someone shouting at you, or trying to talk with a fire alarm going off in the room. The effect of pain on the mind can seem like attention deficit disorder. So you may have to repeat a request, or write things down for a person with chronic pain. Don’t take it personally, or think that they are stupid.  I never realized or appreciated this aspect of pain.  I often thought to myself Vic must be doped up, disinterested… As a family we were not aware of this aspect of pain.  Vic at times seems totally disinterested in the boys, the family, in life…

4. The senses can overload while in pain. For example, noises that wouldn’t normally bother you, seem too much.  Vic battles with too much movement or noise.  She becomes very irritated.

 5. Patience may seem short. We can’t wait in a long line; can’t wait for a long drawn out conversation.  Absolutely!!  If Vic wants something she wants it now! 

 6. Don’t always ask “how are you” unless you are genuinely prepared to listen it just points attention inward.  Sometimes I am too scared to ask.  Some day’s I say “Oh, you are looking so great today” and Vic will reply “Oh good…” and I know that she is thinking “Tell my body!  I am feeling like death”

7. Pain can sometimes trigger psychological disabilities (usually very temporary). When in pain, a small task, like hanging out the laundry, can seem like a huge wall, too high to climb over. An hour later the same job may be quite OK. It is sane to be depressed occasionally when you hurt.  Tonight Vic could not rub the hand cream into her little hands.  She could not pull a brush through her hair…

8. Pain can come on fairly quickly and unexpectedly. Pain sometimes abates after a short rest. Chronic pain people appear to arrive and fade unpredictably to others.  I think Vic is past this stage.  Her pain is debilitating relentless and never-ending!

9. Knowing where a refuge is, such as a couch, a bed, or comfortable chair, is as important as knowing where a bathroom is. A visit is much more enjoyable if the chronic pain person knows there is a refuge if needed. A person with chronic pain may not want to go anywhere that has no refuge (e.g. no place to sit or lie down).  We are past the visiting stage.

10. Small acts of kindness can seem like huge acts of mercy to a person in pain. Your offer of a pillow or a cup of tea can be a really big thing to a person who is feeling temporarily helpless in the face of encroaching pain.  Every small action elicits a “Thank you Mommy”  Reuben actually remarked that in the past Vic took everything that I did for her for granted.  At this stage of her life Vic drives me absolutely mad with all the “Thank-You’s”

11. Not all pain is easy to locate or describe. Sometimes there is a body-wide feeling of discomfort, with hard to describe pains in the entire back, or in both legs, but not in one particular spot you can point to. Our vocabulary for pain is very limited, compared to the body’s ability to feel varieties of discomfort.  Vic’s pain is well-defined but at times she has referred pain.

12. We may not have a good “reason” for the pain. Medical science is still limited in its understanding of pain. Many people have pain that is not yet classified by doctors as an officially recognized “disease”. That does not reduce the pain, – it only reduces our ability to give it a label, and to have you believe us.  We do not understand pain.  I never have pain.  I cannot imagine not being able to walk, run, work, function, drive, live due to debilitating pain.  I groan from flu-pain…I don’t know how it feels to have a frozen abdomen, fractured vertebrae, migraines from skeletal collapse, chronic and unrelenting tissue pain…. There are times that I think surely it cannot be that bad?  I don’t understand Vic screaming with pain but I KNOW her pain is real!!!

Author Unknown” http://connectivetissuedisorders.wordpress.com/2011/05/20/tips-for-dealing-with-people-in-pain/

 In addition to the above I would like to add some of my own observations…

13.  Pain makes people emotionally over-sensitive.  Vic often misinterprets what we say.  She takes things very personally!  She is almost jealous of the boys and my relationship.  She feels excluded from so many aspects of our lives.  Last week Vic said “You are the fun-Oumie.  I don’t make my boys laugh”… She is very sensitive as to who the boys ask permission to do things or go places…   It is okay because she is scared of losing everything that is precious and dear to her.

14.  Pain makes people selfish.  This is a harsh statement.  When your body is engulfed in pain it must be very difficult to see reason and to wait.  It must be difficult not to lash out at the world.  To not stop and think of the effect that your illness has on your family and friends.

15.  Chronic pain and depression are closely linked. Chronic pain almost always leads to depression:  Why?  Just imagine a life consisting of dreadful, mind-blowing, unrelenting pain?  Imagine not having anything to look forward to…  We try to set little goals for Vic.

16.  Fatigue is a definite factor.

23.2.2012

Whether it is the pain medication or the emotional strain of coping with the pain, Vic is chronically and permanently tired.   We leave her to sleep.  We are far happier seeing her in bed than seeing her battle to walk, sit or participate…It stresses us that she gets up when she is so tired.  Vic falls asleep in a chair, the bath, the car, on her feet… We are at loggerheads with Vic in this regard… We want what is best for her…

17.  Addiction:-  “Patients often fear addiction. Patients with chronic pain do not and cannot get addicted to morphine. This is proved clinically by seeing patients whose pain is abolished (with a nerve block, for example) when even high doses of morphine used for several months can be stopped immediately with no withdrawal effects. Patients who are terminally ill still often fear that they may become addicted to morphine. They and their families can be reassured. This cannot happen when morphine is correctly used to control their pain. http://www.hospiceworld.org/book/morphine.htm“

The amount of medication that Vic takes is a source of great embarrassment to her.  Her biggest fear is that people will think of her as a “drug addict”.  This often prevents her from taking adequate medication. Do not even jokingly call someone who is chronically ill a drug addict…You have no idea what you are talking about!   Quite frankly I don’t care whether Vic is an addict or not…as long as she has some quality of breathing or life as she now knows it.

I wish I could research exotic vacation spots rather than “Tip’s for dealing with people with pain”  But this is part of our journey…

A day in the life of Vic 15.7.2012


A day in the life of Vic.

A day in the life of Vic


Image“Just because her eyes don’t tear doesn’t mean her heart doesn’t cry.  And just because she comes off strong, doesn’t mean there’s nothing wrong.”

My beautiful little Vic is not in a good place emotionally.  She feels that she has lost almost everything that is precious to her.  She has no future that is not encased in pain, loneliness and further loss.  Vic does not have a job to look forward to or even a shopping excursion.  There is no hope or prospect of a holiday…not even a visit to a spa, a manicure or a pedicure….

A good day is a day without vomiting too much, some time with the boys, maybe a visit from a sister or friend…

Imagine if that was all there was to your life? Imagine a life like Vic’s…

What goes through her mind?  Vic does not wallow in misery all the time.  She sleeps…Maybe it is not her body shutting down, maybe it is her mind shutting out her situation.

I sit here tonight and I am planning tomorrow.  I have to arrange for our oak tree to be pruned and treated, I have to approve a sighting system for the Middle East, inspect some armored vehicles, organize flights for some staff to Saudi, pick the boys up after school, arrange Jared’s extra maths, sign up at a gym…  dentist appointment at 09:30 and take care of my beautiful, sick little girl.

Tomorrow morning Vic will have breakfast and then 39 tablets.  The boys will kiss her goodbye and Vic will sleep again.  Vic will wake up at 11:00, have coffee and tablets.  We will try and get her bathed before the boys get home.  Primrose will change her linen and clean her room whilst I am bathing and dressing her.   Vic will have lunch and fall asleep again…exhausted from the effort of bathing.  The boys may or may not find her awake when they come home.  Vic will wake up at 15:00 and chat with the boys for a couple of minutes.  She will have coffee and tablets.  She will sleep until dinner time… Take 39 tablets….. This is her life!  The only deviation is the vomit breaks…sometimes it is a couple of bouts a day and sometimes it is at night.  Sometimes it is during the day and the night…Extra baths to clean up and extra linen changes…

Her TV remains on 24/7 but I don’t know whether she has watched a complete program in months.

Vic no longer reads, hopes or lives.  Vic no longer joins us in the TV lounge or for dinner.  She is too ill to get out of bed.

ger Vic very seldom cries anymore.  She is stoic in her lonely journey.

As parents, we try not to wallow in the bad prognosis, but we need to be honest with what the prognosis means and the inevitable outcome. We have to accept reality.  We have to guide our family through this.  Help the boys to get through this as unscathed as humanly possible!  We also have to provide an environment that will be peaceful for Vic and allow her space to come to terms with her life.

The most difficult thing for the family is however to tackle the problems of a very ill child rather than each other.

We love one another and support one another.  We will survive this ordeal as a family.  We are not perfect but who is?  We err in love.  But we love deeply and always and forever!

Addison’s and Vic’s Brazilian Blow-Dry 12.7.2012


Addison’s and Vic’s Brazilian Blow-Dry 12.7.2012.

Addison’s and Vic’s Brazilian Blow-Dry 12.7.2012


ImageWe decided that we needed a 2nd opinion on Vic’s arm.  We had a 10:45 orthopod appointment with her own Orthopod!  (She was treated by the trauma orthopaedic surgeon in hospital)

 Well, the orthopedic appointment did not go well at all.  Firstly, her original orthopaedic guy would not look at her arm.  He is not the treating doctor and it is unethical.  Blah, blah, blah.  If I had gotten a 2nd opinion on her back Vic may have been spared 10 years of absolute hell!!!!!!!!

 Eventually he looked at her knee, which is hurting like hell, and I slipped the humerus X-Rays into the other X-Rays…

 We sometimes forget how every tablet Vic takes, affects something else.  Vic was diagnosed with Addison’s two or three years ago…

 “Addison’s disease

From Wikipedia, the free encyclopaedia

Addison’s disease (also chronic adrenal insufficiency, hypocortisolism, and hypoadrenalism) is a rare, chronic endocrine disorder in which the adrenal glands do not produce sufficient steroid hormones(glucocorticoids and often mineralocorticoids). It is characterised by a number of relatively nonspecific symptoms, such as abdominal pain and weakness, but under certain circumstances, these may progress to Addisonian crisis, a severe illness which may include very low blood pressure and coma.

The condition arises from problems with the adrenal gland itself, a state referred to as “primary adrenal insufficiency”, and can be caused by damage by the body’s own immune system, certain infections or various rarer causes. Addison’s disease is also known as chronic primary adrenocortical insufficiency, to distinguish it from acute primary adrenocortical insufficiency, most often caused by Waterhouse-Friderichsen syndrome. “

So, part of Vic’s medicinal regime is Cortisone twice per day.  One of the side effects of cortisone is  “osteoporosis or other changes in bone which can result in an increased chance of fractures due to brittleness or softening of the bone”.  Hello???  Osteogenesis Imperfecta + Addison’s + cortisone = disaster!!!

Yesterday, we were coldly and clinically informed by the Orthopaedic Surgeon that there was no way that the bone would ever mend properly.  The humerus cannot be pinned due to the danger of sepsis and the fracture is complicated by severe comminution and poor bone quality.  The surgeon said that when her arm is X-rayed in 3 weeks or even in 6 weeks, the fracture will progressively look worse until eventually there will be some callus formation.  Another dismal prognosis!  I wonder if there will be nerve damage and whether she will ever regain full use of her arm.  From the sounds of it she will only be able to come out of the cast and sling in approximately three months’ time.

Today I took Vic to the hairdresser and she had a Brazilian blow-dry treatment.  Now, for those of you who are as ignorant as I was, this is a “hair straightening” process.  Four hours!!  Shame Vic was sleeping in the chair…poor baby!  She is exhausted but it will make her life so much easier for many months ahead.  Vic will not wash and leave her hair – it has to be sleek…Now with this Brazilian blow-dry thing we can wash her hair and leave it!  Bliss!! 

I never saw my late Mom not immaculately dressed with her hair beautifully done.  No matter how ill she was, Mom went to the hairdresser three times a week.  Her nails were always immaculate and Mom would get very annoyed with me if I wasn’t wearing make-up and had my hair in a ponytail.  “Always the lady” was her motto.  As it is Vic’s.  I find it absolutely amazing that she insists on getting dressed most days.  Well, certainly before the boys get home from school.  She does not want the boys to see her in pyjamas. When we wash her hair it must be blow dried…She will not scrunch it or put it up in a ponytail, plait or pin…Vic’s hair has to be sleek…No matter how ill she is.

Her little body is so swollen from the cortisone.  Her face looks like a little chipmunk’s!  It happens from time to time.  What is worrying is that Vic’s blood pressure is steadily increasing.  Addison’s symptoms include low blood pressure…so why is Vic all of a sudden developing high blood pressure?  And Madam will not see a doctor!  What to do?Image

Vic does look so beautiful after her hairdressing marathon.  She is passed out and I know it will take her a week to recover from this outing.  But, it is well worth it!

 

 

 

 

I wish for Vic….10.7.2012


Image I found the blog of a 19 year old girl – Katie Michele who suffers from Marfan Syndrome.  Marfan is a connective tissue disorder.  This is a very special young lady who deals with Chronic Pain and the fear of aneurysms every day of her life…I have copied part of one of her blogs addressed “Dear Marfan”  because I think this is what Vic could have  written when she was younger… Please read her letter to Marfan… it will give you some insight into the heart of an ill teenager.

 “I  wish I didn’t have to wonder if you’d cause any future child of mine suffering, or if I’d lose my own life in the attempt to have one.

 “I wish you hadn’t taken my sports and many of my friends, and replaced them with medications and doctor appointments. You’re constantly reminding me that no part of my body is safe from your consequences and that it’s only a matter of time before something else goes wrong. You hurt me, day in and day out, standing or sitting, year after year, from head to toe. Because of you I talk more often to doctors than I do to people my own age.”  http://connectivetissuedisorders.wordpress.com/2012/05/02/dear-marfan/

I wish I did not have to wonder what my child’s life would have been like if she had not been born with OI.  Dr Frank S, I wish I did not have to wonder what life would have been if you had not chosen to ignore your colleagues warning on how poor Vic’s tissue is.  Dr V, I wish I did not have to wonder what my child’s life would have been if you had not perforated her small bowel, not once but twice!  And the biggest wonder of all, I wonder what my child’s life would have been like if I had insisted that Dr S spoke to Dr Coleman.

I wish that Vic could have enjoyed her son’s toddler years; that she could have played ball with them, gone on holiday with them.  I wish the boys could have known Vic happy and carefree.  I wish the boys could remember a day when their Mom was not doubled over in pain, vomiting and sad.  I wish they could remember their Mom going to work…looking forward to a normal tomorrow.  I wish they could sit and enjoy her playing the piano.  I wish that I could wish for Vic to see her son’s finish school, graduate at University, fall in love, get engaged and get married.  I cannot.  My biggest wish is that my poor child’s suffering will end.  That she will truly make peace with giving up…  That Vic will stop breathing and that she will float pain free and joyously to join her father and grandparents in Heaven.

Life has many questions.  Far more questions than answers.  I wonder about the fairness of life.  I wonder why Vic has to go through so much pain and agony.  I wonder why her boys have to watch her slow decline and painful journey. 

I wonder why the bad people, the rapist and murders, thieves and criminals get to live good lives.  Why do they have good health? 

What has Vic ever done to harm anybody?  She was sentenced to a life of pain and misery from conception.  PLEASE!  I don’t want to hear about the “sins of the fathers” sermon. 

A convicted murderer has many appeals before the sentence is executed.  A last appeal to the governor or the Supreme Court or who ever for clemency.  A terminally ill person does not have that luxury.  Their final appeal is to Hospice.  Now, what is left for the terminally ill person to do if their last appeal is denied?

They are not kicking and screaming, fighting the sentence anymore.  Hospice is their own hope of dying with some dignity and quality of “life”  But, like the Supreme Court in the USA and Governor, appeals are rejected quite often.  As in Vic’s case.

I will do everything in my power to ensure that Vic is allowed to spend, what is left of her life, as pain free as possible.  I will do everything possible to allow her to die with dignity. 

I am babbling.  And today Vic is having a good day… But tonight lies ahead with it’s pain and terror…

I am dying 9.7.2012


I am dying 9.7.2012.