Rory Gardiner's Webpage

03, Dec, 2009

Thursday 3rd December 2009


Rory received a blood transfusion today at Whangarei hospital and I'm not very impressed by the standard of care he received.  On Monday, and yesterday, I finalised the arrangements for the transfusion.  Rory had a repeat blood test yesterday morning which showed a transfusion was needed as his haemoglobin had slipped to 81.  The nurse booked a side room on the Children's ward, and the blood was ordered and sent up from Auckland.  Rory had an appointment at 10am this morning to receive the transfusion.  Sean took him to the ward but the nurses couldn't give him the transfusion until a second Doctor had seen Rory and signed off the order.  It took almost two hours for a Doctor to arrive, and when he did he said Rory did not need the transfusion as his haemoglobin was 88.  With a stroke of luck I rang Sean as he was making arrangements to leave.  I insisted Rory's haemoglobin was 81, and he needed the transfusion.  I told Sean to get a copy of the blood results.  While we were speaking the Doctor returned and said he had made a mistake, and yes Rory did need the transfusion.  His said he had read the results wrong because they were busy, and had double checked because there was some confusion.  I was not impressed.  Then it took another hour for the blood to arrive from the Hospital lab so the transfusion was finally started at 1.10pm.  It was given via the Hickman line in Rory's chest.  It took two hours to infuse, and the line was then flushed clear and locked with Heparin.  It was after 4pm when Sean, Sam and Rory left the ward.  I know the Doctors work hard but they shouldn't be making mistakes.  Their mistakes can cost lives.  It makes me angry when I have to fight for the correct treatment for Rory.  I am not a Doctor, but I know my son, and I have learnt, and will continue to learn, about what he needs.  One thing I have learnt this year is to question everything, to take my own notes, and to stand up and insist on what is right for Rory. 

While Rory was at Whangarei Hospital today he received a visit from the Dietician.  She provided Rory with a can of formula (Sustagen) to increase his nutritional intake.  Sean also made arrangements for him to see a dental nurse as he has an adult tooth coming through behind the middle teeth on his bottom jaw.  He hasn't lost any baby teeth so there is no gap for it to go into.  His mouth is quite sore, and he currently has a very low pain thresh hold.  I think his body has been traumatised to the point where he can't take any more disruption. 

Yesterday Rory visited the Child Health Clinic for the repeat blood test which showed his haemoglobin was declining.  I bought Rory a pair of jandals as his feet were getting hotter in sneekers and socks with the warmer weather.  Even something as minor as replacing footwear brings new challenges.  Rory's left sided weakness and reduced co-ordination is exacerbated by loose shoes.  He struggles to walk in the cloggins I bought.  It is a little better with the jandals but we have to hold his hand to steady him, and the left jandal regularly comes off.