Wednesday, January 5, 2011

hard to believe

After losing my voice, my nose has started running and the cough came back, AGAIN.  I'm really hoping this isn't the start of another 6 week long cold.  That being the case, I couldn't in good conscience take Caelan to his appointment at CHEO.  It annoys me to see people walking the halls there coughing and hacking when there are medically fragile and immune deficient children around.  I couldn’t be one of those people bringing germs into a place where people bring their children to get better.

That being said, yesterday was the first time that Damian has ever taken Caelan to a CHEO appointment without me - we think!  We visit CHEO a ton but neither of us can remember a time when I haven't been at the appointment.  What a strange feeling it was to drop them off for Caelan's appointment with nephrology and then drive away. 

Damian said that the appointment went well.  Once again, Caelan cried through his blood pressure but apparently it was still considered a good reading for being upset.  Our appointments will now be every 6 months instead of every three; however blood work still needs to be done every three.  As long as Caelan isn’t getting any infections they’re happy.  The Doctor also made sure to mention that Caelan will be transferred to the Kidney Disease Team from Nephrology sometime in the near future and she didn’t want it to be a big shock to us.  It isn’t, but still…  

We’ve always known that Caelan’s solitary kidney was only considered to be working at an (*big pause) ‘acceptable’ level.  It’s just that when you’re dealing with trach or g-tube feeding issues they tend to be more ‘in your face’ and even though we know there’s always been this kidney issue, well… it’s been easier to forget.   

Caelan’s kidney hasn’t improved or worsened over the past two years.  It’s functioning, but only just.   It’s considered stable.  Sigh   

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