Second guessing

The boy's sleeping is increasingly erratic and his waking hours less active. And then he went blue.

The boy has had an odd sleeping pattern for the past few nights where he sleeps for five hours, is awake for six and then sleeps for a further five. Means foreshortened days. Today was a more limited day than previously. He was awake for only three hours doing a bit of cooking with his home school before falling asleep for a couple of hours in front of the TV.

We woke him for his bath. He was in the bath when the night nurse arrived. I was letting her in when the wife called. His fingers and lips had gone blue. I yanked him out of the bath and we got him connected to an oxygen cylinder while I dried him off. He still didn't look good, so once dried we got him in bed and on high flow oxygen. He still wasn't looking good, still blue at the extermities, so we called an ambulance. We realised that the problem was that he wasn't breathing regularly enough. When I rubbed his chest and told him to breath he eventually did and the colour returned.

The ambulance crew came. But we soon established that there was nothing they could do other than take him to hospital. We said no (we have hospital agreement to that, so they didn't insist). We rang symptom care but there was nothing they could suggest except medicine to pacify him as it was the tumour effect that was slowing his breathing. He was breathing so slowly (only 6-7 per minute) that the wife and I were fighting back tears and saying we loved him. We both thought we were going to lose him there and then. We called auntie round to give him a kiss and one of her pandas stayed with him when she went.

After an agonising hour or so things sort of stabilised. His breathing was slow but he didn't need excessive amounts of oxygen to keep him stable. We gave him more morphine as his arm was waving a bit. The nurse encouraged us to eat. We did unwillingly but went back to him later. He was stable but in a half waking half sleep state. We stroked his hair and tried to ensure he was comfortable. We got a couple of restless hours sleep.

I'm so afraid of what tomorrow brings.