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19, Aug, 2009

Wednesday 19th August 2009


 

The feeding pump ticks away softly between Rory and I's beds as I complete today's diary entry.  I dropped Sam at school this morning and headed south to return to Starship.  I arrived around 11am after negotiating considerable road works and being caught up in slow flows of traffic. 

It was fairly quiet as I caught up on Sean and Rory's news.  There was much laughter at the letter which I delivered from Room 3 (Dargaville Primary).  Rory's weight has increased a little again today, his white blood count is 11.27, and his Neutrophils are up to 6.76 so the daily GCSF injections have stopped.  His blood test results will likely slip a little over the next couple of days without a daily boost of GCSF but his system is now capable of recovering on its own.  We waited for the doctors to arrive so both Sean and I could see them but eventually Sean had to leave to be there for Sam when he got off the bus.  The doctors eventually arrived at 1.45pm and then it was all go!  They had decided Rory could be discharged to RM House.  He has to return to Starship once a day to receive an iv antibiotic (Ceftriaxone), and so the staff can monitor him and provide assistance.  Our imminenet departure created a flurry of work for the Nurse.  The insuflon (small port) in Rory's right thigh, which the GCSF is given into, was removed, and he was disconnected from his lines and had the plugs changed.  The dressings on his Hickman line (chest) and his shunt wound (which will soon be able to be left uncovered) were changed.  I received a crash course in how to feed Rory using the naso-gastric tube.  He has to be connected to the pump/milkshake via a cable for 16 hours per day (4pm until 8am).  He has to receive around 65mls/hr.  Every 8 hours I have to give him Maxilon (half a tablet crushed and mixed with water) down the tube to settle his stomach and move the food through (yes this includes one get up at 12.30am).  Before I connect Rory to the pump each afternoon I have to draw back on the line to check the acidity of the fluid which is withdrawn to ensure the end of the line is in his stomach.  I have to change the milkshake bags and feeding line every 24 hours.  There is a lot to remember, and I have only included half of the detail here!  I have a supply of Pamol and Tramadol to give him if he is in any pain. 

Rory had his repeat hearing test this afternoon.  He has lost a little of his hearing at the higher frequencies as a result of the chemo but there has been no loss in the normal hearing range, and his ears are working normally which is great.  We also caught up with Ros this afternoon for the Beads of Courage.  She is standing in for the lovely Steph who is taking a well earned break.  Rory received 92 beaks of courage for the last three weeks action.  He has now completed four strings (400) and is well into his 5th.  They really are an impressive sight and testimony to how much he has endured.