I am off work, on compassionate leave now. The Government gives 26 weeks off to care for a family member who is gravely ill and has a significant risk of dying within 6 months.

John and I noticed a small change in Mathew’s daily routine ~ enough to make me want to be off with him. I’d rather be too early than…well, let’s just say too early.

Mathew’s appetite isn’t what it was even 3 weeks ago. He is sleeping more and needing more morphine. Another symptom started about 2 weeks ago; his chest hurts and he says it is harder to breathe.

So far his lungs sound normal but the doctor did say there is no way to tell if his lungs are working at capacity any more. He had an xray yesterday and we shall hopefully get results this Friday. There is a thought perhaps he has pleural effusion in a lung or both. It could explain the pain he’s experiencing.

Mathew’s schedule is his own now. We quit the sleeping pills for him because they weren’t working anyway. Even at the full dosage and trying a second prescription nothing made him sleep!! After several weeks of giving him sleep medication only to see him stay awake all night was enough for me to toss them aside!

Right now Mathew doesn’t have a lot of interest in leaving the house. It is taking around 5 days to get him to even think about going out. So we hang out in the house, alternating sleeping and tv or internet. Thank goodness there is a great selection on Netflix and in the movie department!!

With our crazy schedule it is hard to keep up with this on a daily basis. I’m not seeing a change in Mathew’s health daily yet either which is a GOOD thing! The extramural nurse was in today and we went over the list of things to watch out for. There weren’t many checks on the “progressed” side of the page.

Extramural is going to look at what options there are for a hospital bed for Mathew. When they know what is out there they will give us the information and when Mathew’s breathing becomes more laboured we will consider it then. Mathew still wants room for us to hold his hand or hug him.

Right now Mathew is eating 1 to 2 meals daily and often not a lot. Time will tell if this is a new permanent change. He is a bit more selective in his food choices and often will turn down or leave food alone.

We are also looking into whether or not his power port needs flushing anymore. I think Dr. Burnell wanted it left operational in case Mathew opted for more treatment. Palliative care does not use the port for any reason so Mathew might be excused from further monthly flushes. He just had the port flushed yesterday and being at the hospital stressed him out again; even with an Ativan to keep him calm. The idea is to minimize any hospital trips unless absolutely necessary.

So I’m hoping the xray won’t show any fluid in the lining of his lungs. I will let you know after we find out.

Thanks for hanging in there with us!

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