Rory Gardiner's Webpage

20, Apr, 2009

20th April 2009 Part II

Sean met with Mr Law, our Neurosurgeon today.  The plan is to keep taking blood samples every time Rory's temperature goes over 38 degrees in the hope a blood culture will identify any infection if one is present.  He is still scheduled for the operation on Thursday to insert the permacath in his chest.  He has formed a 'blister' it has a long name which even I won't hazard to spell, underneath the stitches on the back of his head from the first surgery.  They are a little worried about its size, but it is not uncommon.  They are also concerned about the risk of hydrocephalus (build up of fluid on the brain) and although he has enlarged ventricles (spaces in the brain) he is not showing any symptoms.  They plan to give him a CT scan on Friday, and take further blood and csf samples.

I have returned to Starship/RM House to swtich places with Sean, and he has returned home.  I've had two nights of 8hour sleep and I'm not sure I feel any less tired!  Being away is hard.  You get to a point where you need to surface and dip your toes in the real world.  You forget what it feels like.  You become accustomed to living within the bubble of the hospital.  Although it is great to get home you develop an itch.  At first you try to ignore it but it gets stronger and stronger and the anxiety and need to get back becomes overwhelming.  I haven't had more than 24 hours away at a time in 5 weeks.  I feel bad for Rory, he hasn't been home at all.

I have posted some new photos today.  One shows Rory wearing and holding his beads of courage.  He is onto his second string.  Each string holds 100!  Each bead signifies part of Rory's journey and they are given to him by Steph.  Star beads are for surgery, black for blood samples, yellow for overnights in the hospital, rainbow for physio, silver for dressing changes, aqua for tube placement, glow in the dark for radiation, and so on.  He gets to choose special milestone beads for accomplishments like; getting stitches out, having taps for csf, and being brave. 

Mr Law wants Rory to remove his patch to encourage his two eyes to work together.  They have made a huge improvment already.  So he is no longer a full-time pirate.   

I meant to tell you all a funny story about Saturday night.  It was my first chance to have a full nights sleep as Sean was staying at Starship with Rory.  I returned to RM House in the dark to find everyone outside, lights flashing, smoke coming out a window, and the fire alarm going.  I couldn't believe it!  The fire engine arrived and the fire fighters rushed in.  Turned out to be someones burnt dinner!

I have also posted a photo of the infamous Dr Jason, and Nurse specialist Steph with Rory.  They have both cared for him since Day 1 on the 17th of March.  Dr Jason must have had a sheltered childhood as he hadn't heard of Star Wars so Rory has lent him a DVD to bring him up to speed!