Day 6

"Home is where the heart is"

I spend a lot of time at the hospital with Shane because home is wherever he is. My house feels empty without him. So all I do there are my basic essentials like washing, cleaning and sleeping. I am much more relaxed and at home when I am sitting beside Shane, even if he is sleeping. 

A big thanks to Grandma for the pics and letter. These really bought a smile to my face after a tough and anxious day. Little things like these, my favourite music and wonderful messages make me feel good also. It is important for me and Shane to surround ourselves with positivity and happiness!

"The Nanna's" are the colloquial term for Grandma Julie, and Nanna Pam who are Shane's carers on Wednesdays and Thursdays, so i can work. 

It is really important to have people here with Shane to act as advocates for him when he is unwell. Shane isn't always aware of what is happening, and as wonderful as the staff are here, sometimes we need to step in and make sure he is getting the right treatment at the right time. 

The Nanna's are wonderfully patient (yes, even Julie) with Shane as they seem to get him on his most crappy days. Don't take it personally ladies, it just seems to be how things pan out! Thanks for all you do for us!

Today was a crappy day. Shane's temperature stayed above 38.8 all day, until this afternoon. When Shane had his 6pm panadol he had a big sweat and it dropped down to 37.2! The best its been in a day or two. Its amazing how quickly things can change around here. Shane does need close and careful monitoring all the time. We have learned that things can change in a heart-beat, for good or bad. We can never be too relaxed around him.

I didn't realise yesterday that they wait until the temperature is below 38 before giving blood products. Shane's platelets were at 19 (below 20 requires a platelet transfusion) this morning. It meant they had to wait all day before being able to give him a transfusion. 

   This is the platelets finally going through!

It is a good night xx