No. 229. 'Feeling scared.'

I was woken at 4am by Chris, he was really struggling to breathe and asked me to dial 999. The Rapid Response from Helston came quite quick. They checked his SATS and they were 92%. I told them not to administer oxygen. The ambulance came not long after, they checked him over too, no sign of infection, just weak muscles. I had tried the NIV on Chris while waiting, it helped a bit, but yet again he could only manage 5-10 minutes. 

I rang Angela, his palliative care nurse in morning, what do we do next to help him? She said to give him half a lorazepam when he goes to bed and if he wakes distressed to do the same again, we will monitor this and arrange for GP to come out and assess him too. I also rang the physio about his neck weakness, she suggested tilting back the wheelchair to support his head, we will try that.

This is so scary, the progression seems to have really speeded up. I have asked Chloe to come home for one day next week before she starts her new job and is back at BIMM. She is going to try the train now she has moved, but she has to sort out a Student Railcard first.

I am having to have someone help me to move Chris now am and pm., my son and his wife at night and his brother in the morning. The physio said the hoist will be here on Friday and Angela will chase the caring situation as she said they should have been in touch by now.

There is not much more to be done except keep Chris comfortable. How long does he have? Who knows? Months I hope...I pray...at the very least, But I am not liking this at all and I am feeling very helpless and very scared.