Wake Up

Easter weekend in hospital with the boy. He finally seems to be recovering. But only because the trachy cuff is up.

Spent the weekend in hospital with the boy while the wife had a rest. Long days. Here from 8am until gone 9pm. Ward short staffed so had to do all cares. No breaks offered on one day. Very tiring.

They boy's sleeping pattern all messed up. Won't go to sleep until after 10pm and up soon after 8am. But at least he is starting to spend some waking time off oxygen. Still needs it overnight but only small amounts.

Boys is cheerful except when trachy cuff deflated and he can speak. Unhappy at deflation because of secretions that then come down. But then so pleased he can speak again. Won't shut up. Always gabbling about something. Then so upset when I tell him it has to be reflated. Points to his mouth and says no - not able to speak. Tries to fight me off and then cries when it is up and won't look at me for a while. Cuff being up makes him subdued, partly he doesn't have the signed vocabulary and partly he misses speaking.

At least being off oxygen for a few hours means he can more easily leave the room to play on the ward. He likes playing with water. He will spend ages at a sink with the tap running putting water in a plastic cup and pouring it into a bowl. When the bowl is full he empties it and starts all over again.

Had a welcome visit from auntie, the pandas and little Stevie (Gerrard). Points to a picture of Stevie on his wall and makes the sign for big. Then points to the little Stevie figurine and makes the sign for small. Then throws both hands in the air, noiselessly shouts goal and pretends to bite his shirt (like Gerrard's goal against Olympiakos, which he loves).

Got him out of bed and in a little car which he can sit in and walk around the ward. Sometimes he wants to be chased, which is good for his weakened leg muscles. Even got him outside on the little balcony where he could play on the little slide. His first fresh air in a month. Have to be careful to do it when the balcony is in shadow otherwise it is too bright for his eyes to cope with.

Restart chemo on Tuesday, hope to get results of the CT scan of his chest and (fingers crossed) to plan to come home.