Rory Gardiner's Webpage

25, Aug, 2009

Tuesday 25th August 2009


I managed to get Rory home yesterday but it was like completing a long and gruelling obstacle course.  I spent much of Sunday night fighting the naso-gastric (ng) tube.  The nurses had given him a fine tube and it was getting increasingly harder to get anything down it.  On Sunday night the alarm on the pump kept tripping indicating there was a blockage.  I tried everything I could think of to get it working, including changing all the lines, and syringing hot water and Coca Cola into it but nothing would go down.  As a reult Rory only received a quarter of his milkshake.  It was obvious the ng tube would to need to be replaced.  We headed up to Starship at 7am Monday morning, before it got busy in the clinic, and one of the nurses, Annike, whipped out the old line literally.  It made a sucking sound and came up like a worm from a hole in the mud, surprising both Rory and I.  She was almost equally as quick getting the new one down, although it hurt Rory and he coughed up large amounts of thick clear saliva.  Annike also took a blood sample, and changed his dressing, and the plugs on the end of his lines. 

At 9am we saw Dr Stephen at clinic.  Rory's repeat heart and kidney tests were fine, and his minor hearing loss at higher frequency was acceptable.  They plan to continue with the same course of chemo.  Rory's blood test results were a little low.  His platelets are 48 and his neutrophils are 1.65.  The platelets have to be 75, and the neutrophils 1.5, before he can start the second cycle of chemo, which was planned for Thursday.  The platelets have to be his own i.e. they won't give him another transfusion to raise the level.  I am taking Rory to Whangarei Hospital on Thursday morning for an urgent blood test, and Stephen will make a decision when he receives the results at Starship.  If the results are high enough Rory will be readmitted on Thursday, if not he will have a repeat blood test on Saturday afternoon and likely be admitted on Sunday.  Rory's weight had declined a little overnight to 23.45kg.  I think feeding him with a tube is making a big difference to his health.  Without it he would be very thin and even more tired than he already is.  It also takes a great deal of stress and pressure off eating, for him, and for us.  He can be free and relaxed to eat what he likes, when he likes.  We met with Amy the Dietician to refine his feeding programme.  I have increased the volume by another 5ml/hr to reduce the time he has to be connected to the pump.  At 75mls per hour he only has to be connected for 14hrs which is a bit more reasonable (5.30pm - 7.30am).  Amy and I also discussed his additional fluid requirements.  We then caught up with Steph who removed the shunt wound dressing and cleaned it.  The dressing can now be left off to dry up the wound completely. 

It was 11am by the time we left the RM House carpark and were on the road for home.  Rory was keen to see Sam, it had been 15 days since they last saw each other.  We liberated Sam from his classroom a little after 2pm, and called in to say hello to Rory's classmates who were also happy to see him, share his news, and tell him theirs.  As I watched the response of the children to Rory I could see him through their eyes.  He really looks like a cancer kid now, different, sick and a little frightening.  Sean and I look back over the different stages and reflect on what Rory's appearance.  With surgery he still had most of his hair, apart from patches with wounds and stitches.  With radiotherapy he looked like a bald kid who had been in a cat fight due to his scars.  With chemo he is very pale and yellowy, missing a lost a lot of his eyebrows and lashes, and connected to the ng tube. 

It was a mess when we arrived home, there was a heap of gear coming and going in two directions, and I was starting to flag.  A plateful of food later, including Dylan's grandmothers decadent chocolate chip biscuits, and I was back on my feet trying to sort through it all, watching the boys play out of the corner of my eye.  They were happy to be together, building with the lego, talking and talking, and in the bath they had a water fight with the syringes Rory brought home from the hospital.  Fortunately there was only one get up last night, a toilet stop and the pump alarm going off for a minor blockage at 4am.  I have kept Sam home from school today so they can have enjoy time together.  They have made lemon juice (guess who is supposed to drink it), had another water fight, watched a movie, played rock and roll stars to ACDC (thanks Grandad), started growing their own dinosaurs in a glass of water, and built with the lego.  I am still trying to get our lives in order and it's already lunchtime!  I hope things are going to be marginally better when Sean arrives in the door tonight.