Rory Gardiner's Webpage

15, Aug, 2009

Saturday 15th August 2009


It's quiet in the room this afternoon, Sean and Rory are both asleep.  The sun is shining in the window.  Rory received platelet and blood transfusions yesterday afternoon.  The platelets are infused relatively quickly (45 minutes) and the blood is given over 3-4 hours.  Seeing the blood being transfused always freaks me out a little bit, I'm not sure why.  I have given blood myself several times, and I'm not a squeamish person.  There is just something about the fragile nature of life connected to blood. 

Dr Stephen came in to see Rory.  The daily GCSF injections will continue until his white blood count is above two.  It is heading slowly in the right directly, today it was 0.28.  This small gain for us is nothing short of a miracle.  Rory remains neutropenic below one.  The white blood count can shoot up fairly quickly once it gets going.  The antibiotics will also continue.  The positive bacteria (Strep) result came from blood collected from one of his lumens (Hickmand lines), but not the other.  However, this does not mean the source of the infection is the positive lumen.  Dr Stephen is going to organise for Rory to have his repeat hearing and heart function tests next week as an inpatient.  The kidney function test will likely be done later in the week if/when Rory is able to be released to RM House.  Dr Stephen interestingly said just because Rory got an infection in the first cycle doesn't mean he will automatically get one with the remaining three cycles, and they haven't had a child develop an infection during all four.  I remain sceptical.  Rory will get weaker as the year progresses.  It is a case of wait and see. 

Sean arrived at 7pm.  It was a wet Northland day so he had been at home looking after Sam who is unwell with a cold.  Sam is with Grannie and Grandad Gardiner for the weekend.  Sean did night duty and as much as I was looking forward to the sleep I found it really hard to leave.  Rory sent me out the door "Mum, it's important he (dad) has me". 

When I came up the Starship this morning, after 8 hours sleeping like a rock, I came bearing gifts, a card and present from the Johnsons and Nana and Poppa Seymour, and a box from Auntie Teri and Uncle Graham in Australia.  It was like Christmas as Rory unpacked everything and tried it out.  Sean also brought down a load of organic vegetables.  A lovely lady from Kaihu, Nye Tatton, dropped them into Dargaville Primary for us.  It has motivated me into action to make some soup, and I have called on Dianne's husband, master chef Ricardo, for assistance.  Thank you very much everyone. 

The Nurses have been gradually increasing the volume of Rory's 'milkshake'.  He is now on 45mls per hour.  They are continuing to give him Maxilon which moves the food through his system and prevents nausea.  He may be able to be taken off the Maxilon in the future if Rory's system copes with the feeding.  I weighed him this morning and his weight has declined a little to 22.65kgs.  He has ceased to eat more than a handful of small bites per day but will drink a little milk and juice.  Today the Nurses are stopping the Tramadol (stronger pain relief).  If he copes they will only continue to administer regular Pamol.  Hopefully this can be given only as required later in the week. 

It has been another quiet day, a little tv, reading, playing the Nintendo, and some school work.  Rory has started to complain of sore legs when he has to get out of bed and stand or walk for short periods.  The Doctors have said we need to start getting him out of bed and moving slowly so we will organise a session with Rachel the physiotherapist on Monday.