Tired of singing trouble

The boy had a good night. That it was one of his home care nurses really helps (him and us). He had a quiet day. But, much as predicted, staffing shortages at the local hospital means the extra support promised is not happening today. We are finding it hard not to feel resentful when we begin to fray towards the end of the day.

Slow start to the day by the boy. Happy to have a neb after waking. In no hurry to get up. Then happy to play in bed. Eventually, got up and played with water in the sink. Did go out on the ward but very clingy.

Secretions no better. Both secretions coming up and going down are wet and copious. Was relieved when the wife arrived to have someone with whom to share the load. Discussed it with doctors since the position is not getting any better. They will review the drugs tomorrow. We need some measure of contol before the chemo starts. Otherwise he will give himself chest infections and be hospitalised.

Slightly lost my cool with the nurse when it turned out that they had not ordered extra suction catheters for him. We've used up the ward's supply. They had to hunt for more elsewhere. Did apologise but it still grates.

Bit better afternoon. Played out of the room. Helped by Mummy and then auntie turning up. He even made tea for auntie and the pandas. When auntie left he looked very tired but refused to sleep. At least he had some quiet time in the cubicle.

The wife and I are increasingle frayed. Limping through the last few hours to his bed time. Just want some rest. Don't know how we'd cope if we didn't have the night nurses.