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Rory Gardiner's Webpage

07, Nov, 2009

Saturday 7th November 2009


 

We think Rory is brewing an infection.  His temperature remains consistently elevated (37.5 degrees), his heart rate is up, and he has fallen to pieces.  Walking around the apartment is an effort which leaves him breathless and exhausted.  He spends a lot of the day distressed, crying, moaning, and whimpering.  We are struggling to help or comfort him.  He is in an unpleasant place at the moment.  We are walking on eggshells; constantly taking his temperature, battling him to administer medicine and his milkshake, fussing to keep him warm/cool, and trying to get him to eat and drink.  Sean and I are both very worried.  A couple of times we have almost given up and taken him across to Starship, but until his temperature hits 38 degrees he won't be admitted, and there is little they can do.  We also don't want to confine him unnecessarily so we battle on.

Rory slept well last night, waking only once for a pee.  He managed to keep his milkshake down.  We continue to give him daily GCSF injections to kick start his stem cells which will repair his immune system.  We are giving him pamol every 6 hours during the day as he cannot cope without it.  In the weekends we continue to give him the antibiotic to protect his lungs.  We went out for a drive to Duder Regional Park today via Clevedon.  Duder is a 148ha coastal farm park managed by ARC.  It has fantastic views of the Hauraki Gulf and surrounding mainland, forest remnants in gullies, pohutukawa fringing the coast, and inter-tidal mud flats.  We walked out to the little shelly beach where Sean and Sam had a swim, and Rory had a snooze.  We had a picnic lunch then completed the Farm Loop Track, making it to the trig among paddocks of sheep.  We drove back via Maraetai, where we enjoyed icecream. 

Yesterday (Friday) Rory vomited when he got up, then complained of feeling tired so slept on the couch for an extra half an hour.  This is very unlike him as he is an early bird.  Sean and I are making more of an effort to get out for a run in the mornings.  Sam prefers to head out with me as I'm slower, go a shorter distance, and avoid most of the very steep hills!  Rory had his GCSF yesterday morning then we went over to Starship so he could have a finger prick blood test.  His white blood count has plummeted to 0.13, and he has no neutrophils.  He is neutropenic, at high risk of infection.  His heart rate was also elevated.  Nurse Nicola was very concerned about him, and said to get bring him straight in if he spikes a temperature.  She expected him to be admitted in the weekend.  Rory's platelets had also plummeted to 14 and he had some fresh bruising so was given a platelet transfusion.  The dressing and plugs from his Hickman line were changed.  We were at Starship until 1pm.  Sam went to school at RM House in the morning and worked on maths. 

In the afternoon we headed out to the Auckland Botanic Gardens for some open space, fresh air, exercise, and botanical company.  We fed the ducks and the fish in the ponds.  I spied an eel in one of them.  We enjoyed walking through the large rose collection.  I explained to the boys how each rose has a name, and a unique smell.  I told them to put their nose deep within a flower and inhale (checking for the presence of bees first).  It was neat to see them enjoying the simple act of smelling roses.  They each tried several varieties.  We also investigated the many new outdoor sculptures which are part of a new exhibit at the Gardens.