Rory Gardiner's Webpage

29, Apr, 2009

29th April 2009


It has been an overwhelming few days so I haven't had a chance to update the website.  Much has been happening.  When I manage to hit the pause button exhaustion kicks in and all I want to do is sleep. 

Rory has been recovering from Sundays surgery.  His temperatures are again fluctuating twice a day to about 38.5 degrees.  They aren't sure of the cause.  None of the blood cultures, csf samples, or pieces they removed have grown any bacteria.  The Doctors are giving him two types of antibiotics intravenously until next week as a precautionary measure.  They suspect Rory's previous high temperatures were a result of chemical meningitis, or a reaction by Rory's system to the artificial parts which were put in.  Today the Doctors removed the morphine pump (pca) and Rory seems to be managing his pain with Pamol.  The physiotherapists come every day to get his body moving.  At first it was just turning his head, then rolling him onto his side, but he is now sitting up and got out of bed to use the loo for the first time today. 

Rory is receiving GCSF (hormone) injections daily to stimulate stem cell production.  Today is day 4.  They have increased the dose today to boost his count in anticipation of a harvest tomorrow.  He had another CT scan yesterday to look at the changes in his head as a result of the surgery on Sunday. 

Rory has been in surgery again today to put a new line in for the harvest tomorrow in his left groin, plus they respositioned the iv in his left hand, and removed the one from his right groin.  Brian, the paediatric anaethetist, who had looked after Rory during the first surgery, looked after him again today.  He got Rory to sign the form consenting for his own surgery! (see the photo).

Mr Law still thinks Rory will need an internal shunt to manage the circulation of his csf.  This will involve another operation to internalise the EVD (drain) he currently has running from his head into a bag beside the bed.  The shunt is a narrow tube running from the ventricles (spaces) in Rory's head, just under the skin, down to his abdominal cavity.  This allows the csf to be drained and reabsorbed by Rory's system rather than have it build up in his head to cause hydrocephalus (fluid on the brain, pressure).  This may occurr on Friday. 

He has had some special visitors; Auntie Deidre and Auntie Lale, and cousin Kateao.  Rory is looking forward to a visit at Matariki when he gets better.  He also had a visit from Carol, the Northern Manager for the Child Cancer Foundation.  She brought an R2-D3 to add to Rory's Star Wars collection.  A lovely parcel also arrived from Hoani and Tahlia Rogers-Brown.  When I was home in Dargaville Trudi passed on a lovely package of cosmetic treats for mum from Brenda Crawford, and a wooden creation from her son which has taken pride of place on the deck.  Thank you everyone, and for the wonderful messages which keep pouring in.

Sam missed the first day of school for the term on Monday. He and I managed to get home on Monday night, and I arrived back this morning.  Sam is being cared for by Grannie Gardiner in Waihue while we try and get to the end of this phase.  Radio therapy is still scheduled to start Tuesday!.  Yesterday I ducked across to Whangarei to organise work for Council.  Dianne was a wonder.  She set up my laptop and organised for remote wireless access so I can work from the Hospital and Ronald McDonald House.  Whangarei District Council have been very supportive and have set it up so I can work from Auckland or home when I am able.  I got a nice treat when I picked Sam up from school, he was proudly holding certificates from the Northern Wairoa Swimming Sports (1st in Backstroke, 2nd in Freestyle) and the Northern Wairoa Triathlon (his team got 2nd).  I also had the chance to meet Rory's new teacher Miss Whiting (see the photo).