Journey

Rory has been poked and prodded for two days, confined to a hospital bed and kept up at night.  It is really hard to balance Rory’s physical and mental health.  Sometimes I think the medical system is too focused on following protocols and procedures to keep Rory’s body well.  If his mental well-being was a more important consideration, and a little flexibility applied, he would recover better.  I understand the need for caution to minimise the risks but he is a 17 year old boy.  He has been through so much already, come January we are asking him to do so much more.  When he has been hospitalised it sometimes feels like a battle to get him out again. 

Rory is still on the Children’s ward.  He has been receiving IV antibiotics and hydrocortisone (stress dose) since Saturday.  He has also had a platelet and a red blood cell transfusion.  He slept most of Saturday and his temperature came down in the afternoon.  He feels physically well but is also feeling trapped and wants to go home.  He had a blood test at 5am to check everything as the Lab staff are on strike from 8am-5pm for the next two days.  We are still waiting on the blood culture result.  Unfortunately we are now having a problem with his port.  It is flushing (so fluid is going in) but the Nurses are unable to draw blood out.  It needs to do both.  I am worried.  The Doctors will likely run some tests today i.e. try unblocking medication and/or dye to see if it is in position.  If there is a problem which can’t be corrected the port will need to be replaced.  This is a surgical procedure which will mean we either need to return to Starship early or the surgery to remove the tumor will be delayed.

Thank you to Shirley for the delicious baking and the Salisbury clan and good friends Dianne and Riccardo for the vouchers.