Journey

This blog is dedicated to all the talented, committed, big hearted doctors and nurses who have been closely involved in Rory’s care over the last 11 years; Mr Law and Nurse Steph, Dr Stephen and Nurse Tracey, Dr Nick and Dr Ilia, Dr Mel and Audiologists Christiane and Hatton, Dr Yvonne and Nurses Jane and Carol, Drs Fonseka and Morrison and Nurse Cheryl and Dr Kath.  You have kept Rory alive, worked hard to ensure he is as physically functional as possible to maximise his quality of life, and provided care and compassion which has enabled us to keep on fighting.  We consider you part of our extended family.  The advent of the corona virus is already placing increased demands on you which will only escalate. Today I wanted to acknowledge and thank you for your significant contribution to the health and well-being of Rory and others.  It is priceless.

Rory is now neutropenic so he has no defence against viruses or bacteria.  This is when he is most vulnerable.  We have him socially isolated.  He is having no close contact with anyone but the immediate family living in our household and the doctors and nurses at the hospital.  He is unable to go into any shops or public buildings.  When we are out in the chair I keep him as far away from people as possible.  There are currently two cases of coronavirus in Taranaki but no community spread (as far as we know) but we cannot risk potential exposure.  Rory’s haemoglobin and platelets are low but not low enough yet for a transfusion.  His counts are still coming down so he has a repeat blood test and likely transfusions on Monday.  Rory has had a couple of decent bleeds.  One on Thursday when the man arrived to clean the chimney.  I turned around to see blood pouring down Rory’s face from the ulcers on his lips and last night when he lay down in bed to go to sleep blood started pouring out of his nose.  He is on stress dose hydrocortisone to try and prevent him from being hospitalised and exposed to new bugs, and to ensure as many beds at the hospital are free as possible. 

Sean, Colt and I are reducing the close contact we have with others in the community, particularly indoors.  Taranaki Regional Council are introducing measures so staff can work largely from home.  Three staff in Sean’s office have vulnerable members in their families.  Yesterday was Colt’s last day at school.  I have been humming and haring about whether this was the right thing to do but as I watched 300+ kids pour out of the school gate yesterday afternoon I knew it was.  Because of Rory we need to be ahead of the game.  Each of those children will have close contact with others, who have close contact with others and so on.  Children can catch the coronavirus and many are asymptomatic (not showing any symptoms).  Their role in transmission is currently unknown.  We are also approaching the cold and flu season which will also be a threat to Rory.  He has received the flu immunisation and the rest of us will receive it next week. 

In amongst all this doom and gloom the Hippocampe All Terrain Chair arrived in a giant cardboard box.  It was very exciting.  We would like to acknowledge and thank the Halberg Foundation, the George Mason Charitable Trust, Parafed Taranaki and an anonymous organisation in our community for funding the chair.  We intend to find an isolated Taranaki beach this afternoon to take Rory for a spin (photo to follow).