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The boy had his first good night's sleep. But after yesterday's exertions only wanted to lie quietly in the morning. Did get out of bed in the afternoon but not really wanting to walk. Looks like our local will take us from tomorrow. Whether the extra support they promised will materialise remains to be seen. We're not holding our breath.

One thing I'd forgotten about being in a cubicle with a trachy child who needs constant monitoring is the difficulty of going to the toilet. [Sensitive readers should skip the next bit] This is in the sense that you need to listen for when the boy needs suctioning. So, you have to keep the door open to hear what's going on with his trachy. And you have to talk to him to stop him getting upset as this will make him cough. But, even so, you may have to dash out to suction. A serious problem when he is chesty. This is not so bad in the current cubicle, where the toilet door faces into the room. It was more embarassing in the other ward as the door faces the corridor. And it is very difficult in the local hospital where the cubicles have no toilet. So you wait for him to have his next dose of medicine and then ask the nurse to stay with him until you return. The small indignities of life with a sick child.

Morning spent quietly, playing in bed. Afternoon, auntie and pandas came. He wanted to get out of bed and make biscuits for auntie (with playdoh). Then we took him to the hospital party. Really lovely event but too much for him - big scary animals and big crowd - so only stayed for ten minutes. But at least he got a nice teddy as a present.

Just when he was looking at his most tired opthalmology rang - typical. Rushed him there. He cooperated with the opthalmologist at first but soon stopped. Inevitably this made assessment rather difficult but he does have problems with his right eye. His left one is ok but not great. Then she put some drops in his eye and said come back in twenty minutes. Went back only to find her with another patient. An hour later we were still waiting. But he had a trachy review so the time wasn't wasted. The ward sister made sure the opthalmolgist came up to complete the examination. We've got to be extra careful to protect the right eye as it is not producing enough tears. There's a risk of drying out causing permanent damage. She was good but a classic example of using technical terms which confuse tired parents not clarify - he has "anasthesia" of the eye. Huh!? Oh, he has no feeling in the eye. There may be "inter-cranial hypertension". Huh!? Oh, there may be swelling in the brain.

Looks like our local hospital are prepared to have him. Probably tomorrow. They came over for a meeting this morning. Went much as expected: Very sorry... Wanted to provide support.. Difficult at this time of year... Staffing issues... Whatever. At least we weren't banking on it. We are too weary, too conscious of not pushing our luck with the Big National Hospital and too keen to go home to argue. We will take whatever the local offers, provided they agree to let him go home early next week (on the assumption that he continues to make steady progress). We could make a big fuss about it but we will need them in future. It's not like we can take him elsewhere in an emergency and they do try.