Thank you God! 20.7.2012


Vic and her big sister Esther

It was with fear and trepidation that I gave Vic her medication last night.  Esther, (Vic’s big sister and a pharmacist) asked me whether the Jurnista replaced the morphine and was just a little surprised that it was in addition to the Morphine, Neurontin, Degrenol and Stilpayne.   My research really scared me yet strangely I was at peace.

By 24:00 Vic felt no difference and her pain was at a solid 9.  By 02:00 her pain was a little easier.  Vic had a fairly good night.  But she is having a very good day!!!  The Jurnista appears to be working!  Vic rested well this morning and went out for coffee with Tracey!  How absolutely amazing is that!

Last Sunday, Frik, a Christian colleague phoned me after church and asked me to give Vic a message.  “Please tell Vicky that God wants me to tell her that He loves her”…   She was too ill and I only told her on Tuesday.  I missed the Tuesday Pain Clinic appointment… On Thursday the Pain Clinic doctor is a wonderful, compassionate, young Muslim man who showed mercy and compassion …

My faith has often wavered over the past ten years.  Not in God but in a God of Mercy.  The actions of the church, Christians, doctors, nursing staff, radiologists, Hospice, family and friends, mostly reflected a cold, loveless society that does not begin to understand what compassion means

When we first received Vic’s death sentence there was an absolute outpouring of love.  But I suppose she did not die soon enough and people slowly and discreetly disappeared out of our lives.  My blog is three months old and most of you too may get tired of the waiting game and stop reading it and disappear into cyberspace.  Well, this time you cannot hurt us because you are faceless.

I am digressing.  This week we were reminded that there are still angels around.   A compassionate man who prays for pain relief of a young woman he has never met, a doctor who prescribes palliative care medication…  The Jurnista could hasten Vic’s imminent demise but I don’t care.  I would rather she spend one pain free day with her boys and family than a lifetime in the pain that she lives with.

Many people have left wonderful caring messages on my email, comments on the blog and Facebook.  Thank you!  It really does mean a lot to us.   Vic does not read my blog neither do her boys.  But Vic has truly appreciated the contact some of her old school friends have made.  As I said before, dying is a lonely business!

But today we celebrate the wonderful new drug!  I thank God for sending angels along our way.  I thank God for His message through Frik, when I was at the lowest low in my life!!  I thank God for Dr Jaffer Hussain!  I thank God for your messages of encouragement and above all I thank God for Vic’s good day!  Thank you, thank you, thank you God!  Even if it is only one good day!

Jurnista – hope or looming disaster? 19.7.2012


I woke up early this morning with a very heavy heart.  It was Pain Clinic Day again.  There is no appointment system – it operates on a first come first serve basis.  Wonder above all wonders no traffic delays… I was first to arrive!!!

The amazing thing is that one of Vic’s ICU doctors ran the Pain Clinic today.  He immediately recognised me and we spent an hour discussing Vic.  He looked at her X-rays and was mortified by the fracture.  He was so sympathetic.  Over the past 5 years he has often been part of the ICU team fighting for her life.  He is well aware of the prognosis and confirmed that the arm would be terribly painful and that there was no chance of it mending.  He knows exactly what her little body has been subjected to over the years.

 We will try an additional tablet, Jurnista, which apparently works on two different pain receptors.  Hydromorphone controlled-release belongs to the family of medications known as opioid analgesics (narcotic pain relievers). It is used to treat chronic severe pain. Hydromorphone works on the brain to increase the ability to tolerate pain. Hydromorphone controlled-release works by gradually releasing the medication into the body to help control pain that requires the prolonged or continuous use of an opioid pain killer.”

 

The side effects seem severe.  But he double checked with the head of the department so I am sure they know what they are doing!  I know that I will not have a peaceful night’s sleep at all!  But so far so good – it is a slow release tablet so no effect at all yet.  Oh, I forgot – it is highly addictive!

I am cautiously optimistic!  Just a little reprieve would be great!

 Poor Jared.  Just when we thought he has recovered so well from the Nissin Repair, chest pain strikes again!  (Nissen fundoplication is a surgical procedure to treat gastroesophageal reflux disease (GERD) and hiatus hernia. http://en.wikipedia.org.)

Jared was born with a reflux problem.  He was the best projectile vomitter ever!  As he grew older he stopped vomiting (in public) and never complained.  He then started chewing Rennies.  No matter who he went shopping with, he always came back with a pack of Rennies.   Obviously nobody reconciled his Rennies intake…  Until he developed chest pains!

Long story short is that after six months of treatment, the decision was made to do the Nissen repair.  I may have blogged how well Jared did post-operatively, how brave he was and how wonderfully he recovered.  So it came as quite a shock when I received a call from school yesterday asking me to pick Jared up as he had severe chest pains again…

 We spent the afternoon at the doctors.  Chest X-Ray, ECG and then a CT scan.  CT showed up several kidney stones… Average size 6.6mm.  The chest pain was caused by something called Costochondritis.   Costochondritis is inflammation of the junctions where the upper ribs join with the cartilage that holds them to the breastbone or sternum. 

Today Jared went for blood tests.  Once the results are back we will start seeing some specialists to resolve the kidney stone and calcium build-up problem.  The Dr suspects Jared has either an autoimmune and/or connective tissue problem.

 I was thinking today, that if we only have one life, how come it is so crappy?  Why can I not be the ill one?  I have made many mistakes in my life and stepped on a couple of toes in my career.  People love me or hate me.  Vic has never deliberately gone out to hurt anyone.  She was born with this dreadful disease.  And now my beautiful Jared… I could not bear going through this again with him.  He has such a pure heart.  The scariest thing is that he has witnessed his mother’s struggle and steady decline over the years. 

ImageThere are times that Vic cannot remember – the times that she was in ICU, ventilated, sedated, critically ill – all of this the boys lived.  Vic does not know what tomorrow holds but if Jared is diagnosed with OI he will know exactly what lies ahead of him.  I see the helplessness in his eyes when he looks at her.  I hear his frustration with her battle…  Please, if there is a God of Mercy, let Jared be spared this. 

Tonight I am not in a happy place.  I spoke to the UK kids and feel content that they are settled and doing well.  Spoke to the little ones but the longing is worse than ever.  Chloe graduates tomorrow.  I am not there to share this milestone in her life.

 Life sucks.

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