Tag: perfalgam

I read in the Bible that Heaven is a great place…”


Dr Sue putting up the drip. "If we knew you were going to take a photo we would of had our hair done..."
Dr Sue putting up the drip.  “If we knew you were going to take photos we would have our hair done…”

Sue came in this morning and managed to find a vein.  The vein held for the Perfalgan and she also managed to get a bag of saline into Vic.  This will hopefully rehydrate her.  It has been a rough 24 hours with so much vomiting.  The poor child…

We hooked the saline onto a hanger and it now hangs from her ceiling.  Leon, SiL, put a hook into her ceiling and we have suspended the drip from it.  I have to keep the drip flowing until 12pm tonight when I can run another lot of Perfalgan.  Tomorrow Sue will try to find another vein.

I suggested that Vic is mainlined or a stent is fitted.  Sue agreed that it would certainly make life a lot easier.  It would be easier to administer all Vic’s IV medication.  Vic said “Sorry Mommy, no hospitals…”

Vic's drip suspended from the ceiling
Vic’s drip suspended from the ceiling

Her heart rate, even whilst she is sleeping, is constantly above 110.

The IV medication immediately helped.  Vic’s breathing is better.  Vic has not vomited since 11 am this morning!  She even managed to have a bit to eat tonight.

When Sue left today she asked me what is holding Vic back.  Medically and clinically speaking there is no explanation why Vic is still alive…. She said that she has never seen anybody fight death the way Vic does… She asked me whether we have given Vic permission to die…

Sue says that Vic still says we are going to Italy next year…. Her kidneys and liver have failed.  That is what the blood tests show.

What is holding Vic back?  Sue says death happens when one relaxes completely and deeply!  Vic’s adrenaline levels are preventing her from relaxing and dying.

All I want is for my little girl to find peace and her suffering to end.

Esther and Leon brought dinner tonight and just visited.  Vic even got out of bed for a while and had a laugh.  It was great being surrounded by the love of the family.

I wish I knew what to do to make Vic accept the inevitable.  I wish with every fibre of my body Vic will find peace.   That she will find the strength to let go…

Vic has been ill for such a long time.  Maybe she just thinks this is how life is.  Maybe she cannot remember what it is like to feel good, go out, be carefree, move without pain.  To play with her kids, go out for drinks or a movie with a friend.

On Christmas Eve Siza said to Vic “I read in the Bible that Heaven is a great place”….

Here On Earth …, There In Heaven…

Here on earth imperfection, there in heaven perfection
Here on earth discontent, there in heaven content
Here on earth disgrace, there in heaven grace
Here on earth disease, there in heaven ease
Here on earth hatred, there in heaven love
Here on earth war, there in heaven peace
Here on earth decay, there in heaven freshness
Here on earth selfish, there in heaven selfless
Here on earth oppression, there in heaven liberty
Here on earth agonize, there in heaven relax
It’s either on earth, or in heaven
The decision, all yours 

Obed Akuma
vicbaby

 Baby Girl it is time for Heaven…   You have to let go!

“I’m tired of living but I do not deserve to die. I am motivated by nothing yet I move on… “


“I’m tired of living but I do not deserve to die.  I am motivated by nothing yet I move on.  I have nothing but I have everything.  I just don’t want to understand.“

Muriel posted this message on Vic’s Facebook page.  Today it echo’s my feelings.  I am so tired of living.  I am so tired of this miserable existence that we call life.  Surely, there must be more to life than breathing!

Today was a day out of hell.  I had to leave home early this morning as we were testing some systems that are critical to a contract that we are negotiating.  I got up with great difficulty, showered, and made Kreemy Meal for my family.  Both Jared and Vic need soft foods.  I left on time with strict instructions for Danie as to where and when to collect Vic’s morphine syrup from the Pain Clinic.

Within 5 minutes, I was stuck in terrible traffic.  Five lanes reduced to two…

Once we reached the test site, the subsystem manufacturers arrived 2.5 hours late!!  I phoned Vic to check on her only to be told that she had gotten ill all over herself!  She had to bath and I was not home to help her!  I told her to take anti-nausea tablets, lie down for 15 minutes, and take morphine tablets again.  Once she felt better, she would have to ask Primrose, the helper, to help her bathe.  I could not leave the test site.

Danie phoned to tell me – “No Morphine Syrup – come back next week”.  Some good news was that Esther came to visit and helped Vic bath.  That girl is an absolute saint!  Esther also took Jon-Daniel to the movies.  I am so grateful that he could get out of the house of gloom and illness.

Then the system failed…  The shipment would be delayed by at least another 5 weeks!

Another traffic jam to my next meeting…

An hour and a half later, I left the meeting for home and was stuck in the 17:00 peak hour traffic!  A 20-minute trip became a 1.5-hour trip!  Arghhhhhh

At home, I quickly prepared dinner. Vic has to have dinner by 18:30 as she must take her medication at 19:00.  In my haste I forgot poor Jared is only allowed pureed food so I started cooking (a second meal) some gem squash, potatoes, and carrots for him.  I put it through the strainer and rushed off to his room with a tray and his pureed food.  I do not know what I did but the next thing pureed vegetables and broken Noritake was all over the floor!  I just burst into tears.

I cannot believe that something that I would normally laugh off as an accident set me off.  Poor Jared had to eat soup for dinner.  He is so tired of soup!

Well today, I am fed-up with life.  I am tired to the core of my soul.  I do not want to hear that I am doing a great job or that I am strong.  I do not want to hear anything!  All I want is ONE carefree day in my life!! One day with absolutely NO responsibilities.

Oh dear God, the boys offered to do their Mom’s tablets tonight so I can have a full night’s sleep…What am I doing with my pity party?  I have Vic in tears because she is feeling guilty because of the stress her illness has caused me, the boys feel guilty because I am tired and Danie wants to take me away for a weekend so I can rest and relax…How can I ever relax whilst my child is so ill.  I do know I cannot afford to cry.  It distresses everyone around me.

I need a stronger anti-depressant.

I am going to bed.  I am going to feel sorry for myself in the privacy of my room where I cannot cause more stress in my family’s lives.  Life is already so hard for them.  Tomorrow is another day and we will face whatever life throws at us!

“I’m tired of living but I do not deserve to die.  I am motivated by nothing yet I move on.  I have nothing but I have everything.  I just don’t want to understand.“

A lifetime ago…