Rory Gardiner's Webpage

14, Aug, 2009

Friday 14th August 2009


I'm amazed Rory hasn't slept at all during the day over the past couple of days considering what he has been through.   He is a very different boy to the vibrant Rory we brought to Auckland a little over two weeks ago.  He is pale and thinner.  He is losing his eyebrows and eye lashes.  He no longer eats and is drained of energy.  He is quiet and easily frightened.  The nurses put the naso-gastric feeding tube in late yesterday afternoon.  I had to hold him down as he fought.  He coughed a lot, cried, and spat out large amounts of saliva.  The tube is taped to his right cheek and irritated his already sore throat and runny nose.  We are still in isolation pending the swab results.  The nurses couldn't draw back on the tube from his stomach so he needed a chest x-ray to make sure the end of the tube was in the right place.  The nurse also changed his dressings (shunt and Hickman line) and the plugs on the end of his line.

It was another busy night.  The nurse looking after Rory described his room as a train station.  Through the Hickman line he is being given 3 types of antibiotics, fluids, and anti-nausea medication.  Last night the nutritionist started him on the liquid 'milkshake' through the tube.  He is receiving regular pain relief, blood samples are drawn early every morning, and obs done every 2 hours.  He needs assistance to go to the bathroom as is connected to pumps in two places, and these are plugged into the wall.  He needs comforting when he is disturbed or wakes distressed, and often gets caught up or disturbed by the lines and tubes.  Put this all together and it results in no more than half an hours sleep at a time.  I think I have given up trying.  You hover in this place at the end of the light but before the dark , twilight. 

Rory was awake, sitting up and feeling sick at 2.30am.  For an hour he coughed up thick clear saliva.  The ulcers in his mouth and throat, and the newness of the tube, make it difficult for him to swallow so the saliva has to go somewhere.  Plus he had received a sufficient quantity of the milkshake to make his stomach rebel as it has been largely empty for a couple of weeks.  The nurse started the anti-nausea medication.  Rory dozed sitting up for the remainder of the night.

The blood test results this morning have shown his white blood cell count (immune system) has increased a little, from 0 to 0.16.  This may not sound like a lot but it means he is turning the corner.  The results also showed his haemoglobin and platelets are very low so he will be receiving a blood transfusion later this afternoon.  Rory has hardly spoken today, communicating largely through sounds and gestures.  This is partly a physical response and partly mental.  We have seen him regress before under extreme stress.  The Dietician, Amy, came in to see us.  She is going to increase the volume of his milkshake gradually over the weekend, and continue with the anti-nausea medication until he gets used to the feeding. 

We have had a quiet day; watching tv, playing board games, playing the Nintendo, doing some art, learning about time, and reading. We read a story today called "Hinemoa te Toa" about a little girl who was tough and not afraid.  She would scoff at the other children.  "I'm a warrior" she'd say.  "Hinemoa te toa - just like my ancestors".  "E taniwha" she cried "I am Hinemoa te Toa, bring it on".  We reckon the story should read "Rory te Toa"  "E cancer, I am Rory te Toa, bring it on".