Just one more

A queasy weekend. A sense of something about to be snatched away. A time of nursing not parenting.

First weekend home since the start of March. But an underlying queasiness that it might end at any moment and we will be back in hospital. He's still not had a night without oxygen since the start of March. And in trying to work out how we manage his secretions with drugs always in the back of my mind the worry. The worry that we are taking risks that might put us back in hospital if we let too much saliva get on his chest.

His chest is only just stable enough for us to be home. He is just able to manage in air during the day, though not at night. His cuff was up at hospital, though this seems to have been building huge resentment and anger that boiled over when it was deflated and he could vocalise at us and
everything else in a massive "it's not fair" rage that could not be assuaged.

As a result, we have been trying to work out if we can control secretions by trying a new drug. The hospital haven't much information about the right dose (only the maximum). We are therefore forced into trial and error within the maximum.

Had my day with the boy on Saturday. A firm approach by the night nurse had got him asleep at a better time than he had been slipping into in hospital. He had a bit of a lie in but woke up cheerfully. Deflated the trachy cuff and gave him some physio. Plenty of yellow custard comes up and his oxygen saturation eventually stabilises in air.

Go downstairs. Not sure what he will want to do and whether the old routines of play apply. Persuade him to help with the washing up but soon he wants TV. Have to try to familiarise myself with his new medicines and timetable. In hospital, I can afford to leave this mostly to the nurses and just administer what they bring. Now have to plan more rigorously, especially those medicines that need significant preparation effort or time. Makes it feel like providing care not being a father. Hope this will change and I lose the sense of so much of it being "duty".

Day saved by going to auntie. He goes in his trike wearing wraparound sunglasses, to protect his eyes. Am aware of the looks he gets from people in the street. But auntie's is a chance for him to make tea/coffee, see the pandas and, crucially, watch Cbeebies. We are lucky that she is so tolerant of us and him. Then take him to the shops before we risk pushing our luck too far. Hard work today. Not much fun.