Monday, March 08, 2010


Ethan was awake all day yesterday. He was exhausted and his behaviour was all over the place. He yells and screams and wants you to sit with him one minute and then he's telling you to bugger off the next. He gets very angry and slams doors and throws things. It was a long afternoon. I was hoping he would have a good sleep and sleep most of the morning but he was up a few times and he woke early this morning.

By lunch time the same pattern of behaviour had started. It was horrible. Uncle Colin was flying back and I stupidly offered for him to go to the airport. He said yes and about 5 minutes later I was regretting opening my mouth. We loaded the car and set on our way. A minute into the trip I was going to turn around and take him home. He was confused and crying but it seemed he would fall asleep. He fell asleep 10mins into the trip. Finally he could get some rest but 2mins later he was wide awake. When we got home he spent 3 hours yelling at me. Telling me he hates me, that I'm stupid, go away, come here etc. I'm not too sure what they can do for this but something has to be done or we'll all end up at a loony bin. He has had 3 extra midaz break throughs this arvo and he was still up yelling at me. I was pulling my hair out. He has also had a major coughing fit this evening and is now coughing small amounts of blood. Lets hope this doesn't get worse. He finally fell asleep exhausted at about 7:30.

I paged the palliative care nurses. After discussing the issues with the Dr, we have a plan. Hopefully Ethan has a settled night and we will go to Monash tomorrow morning for a review and a change in pump medication. If he is unsettled we are to give morphine and midaz. Hopefully that will get on top of things until the morning. If not we will be going to Monash overnight.

Hopefully this upcoming review will get on top of things. I'm not to sure how long I can keep going like this. It is taking it's toll on all of us.

1 comment:

Anonymous said...

Sending you guys all our support and strength. Hoping you can tap into it when you feel the need.
Judi & Rob