Ivan took over at the hospital today and so I spent the day running around trying to get a whole weeks worth of chores done in 6 hours. It feels good to be out ‘in the real world’ and doing normal stuff. But the second that I think that i feel guilty for not being in hospital with Seth. After school I squeezed in as many hugs with the girls as I could. Before I know it it is bedtime. I am back into hospital in the morning, but not before an early morning swimming session with Evie – a bit more normality.

Back…but not back

The excitement of getting my boy back yesterday soon subsided as I realised the side effects of being sedated for over 7 days may take a while to wear off! He is talking, but only responds to direct questions, he seems confused, all his strength has gone (he can’t even sit up in bed without help), his eyes are dilated and won’t contract, his tummy hurts…the list goes on. Apparently this is part of coming down off of the huge doses of morphine he has been on.

But while he has sat in bed eyes glazed over and barely responsive everything else has ploughed on. We left PICU and moved back to Piam Brown. It was nice to be ‘home’ but sad to leave the amazing PICU team behind, they have taken such amazing care of us. Once on Piam Brown his second round of chemo got fully underway, and that is how we spent the day, hooked up to Chemo, watching T.V.. I have my little boy half back, but I have never felt so lonely in here. I want my mischievous, troublesome, pickly boy back. For the first time in days I want to cry.