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Rory Gardiner's Webpage

28, Sep, 2009

Monday 28th September 2009


 

The boys have settled into life at Whakapara fairly easily.  They are close to Grannie and Grandad Gardiner, and have always enjoyed staying at their home.  I don't think the finality of the move has sunk in for Sam or Rory, it's almost like they are on a holiday, and things will return to normal at some point in the future.  At the other extreme I feel like I have been through a heavy duty wash and wrung out to dry.  I feel almost permanently faded and stretched, traumatised by the events of the last week.  

It took most of the morning yesterday (Sunday) to organise things at Whakapara so the boys had a bedroom of their own, and Sean and I had a space (we are living out of boxes).  Sean and I headed back to Waihue with the trailer late morning to collect the last of our gear.  It was an afternoon of cleaning and loading.  The trampoline was a particular joy to wash.  I liberated as many spiders as I could, but was devastated to see others drowning in the soapy washing water.   Our neighbour Iris called in.  She and Clive are going to put our wagon wheels at the Waihue hall.  Sean and I are glad a piece of our home will find a permanent place in the community.  Both Sean and I said our final goodbyes to the house, and driving out of the driveway for the last time I was crying. 

Rory and Sam enjoyed their day.  They played hide and seek with Grannie, Rory made lunch (our no. 1 chef), they made and played with playdough, competed on the playstation, and went for a walk up the back of the farm.  Rory had his GCSF injection in the morning, and his milkshake is running at 80ml/hr at night.  He has had a few nights of broken sleep, waking up for a pee or because the pump alarm is going off as he is lying on the ng tube. 

Sean went goat hunting today (Monday).  I planned to go to Whangarei District Council to work but life got in the way (again).  Rory's ng tube was very difficult to flush this morning.  I tried Coke and hot water down it but it was under a lot of pressure.  There were only two options; take a chance it would be working tonight and if it wasn't Rory would go without his feed and have to go to Whangarei Hospital tomorrow for a replacement, or go in for a replacement today.  I decided to go today.  As I have learnt it is better not to leave things.  I took the boys into Whangarei and it was pouring down.  We got wet getting to the Pathology lab for Rory's blood test.  Rory is comfortable with a finger prick but as he needed several tests done it was either have several finger pricks or put a butterfly needle in his arm and draw blood out with a syringe.  Rory didn't want the butterfly but as the first finger prick yielded little blood we had to use it.  He cried and screamed.  I had to hold him, and try and keep him calm.  Doing this to him always makes me feel bad.  The boys and I spent the next three hours in town, wrapping up the last of the details from our move and the house sale, calling into Council to sort out some outstanding work issues (thank you for the birthday pressie Dianne), and preparing for Grannie Gardiner's 60th birthday on Wednesday.  This afternoon we went up to Ward 2 (the Children's ward) at Whangarei Hospital and Nurse Jo changed the polyskin dressing on Rory's Hickman line, the plugs on the end, and the Heparin inside.  She also removed the old ng tube (which happens pretty quickly).  Rory vomited up thick clear saliva.  She put the new ng tube down but there was a lot of fiddling around with it (pushing it down, and pulling it up) before I could draw something out of his stomach (test the line is working).  Rory got a very cool bead of courage for his bravery.  It's a red ceramic ring with raised green bumps around it.  It's really hard forcing Rory to endure procedure after procedure when I they hurt him, and often begs not to have them.  Some days I wonder how far we will have to go to keep him alive, how much he has to take.  No 7 year old should have to face what he does on a regular basis.  I take my cue from Rory and steel myself to what must be done, always try and make the best of life, and push the bad stuff behind us quickly.  We all must continue to look and move forward, believing there is something better ahead.