Andrew's John Kenneth McCann diary, Friday 19 July, 1996

Last updated, 19 July, 16:00

Mandy did not have a good night last night. She decided that she was going to get up to feed John at 6am so that he only had to have one cup feed during the night, but then she spent the night wondering what time it was and whether she had slept through her alarm. It seems that there is so much activity on the ward in the early hours that she kept convincing herself it must be six o'clock when really it was still the middle of the night. She is keen to get home again to have a good night's rest, but we have to weigh up the better sleep she would get at night against the travelling and the lack of rest during the day.

Mandy tells me that John seems to have discovered that he has arms and legs. He has been waving them about all over the place, which does not bode well for nappy changing. There are some advantages to having a nearly comatose child. I didn't get here until early afternoon as I had been trying to sort some stuff out at home and by the time I got here he had quietened down again. I guess this was due to his 4am dose of sedative taking effect. We had to encourage him to get started feeding at two o'clock, but when he got going he did really well. Unfortunately, he has got terrible hiccups after every feed, which keeps him from going to sleep again. His hiccups sound really cute and it is pretty minor given everything else he has had to deal with, but you can't help feeling sorry for him.

This morning I began printing out copies of these pages for people who do not have web access. I started with the pictures as I knew they would take a while and I could get other stuff done while they were printing. Unfortunately, I had left the power supply for the PC here at the hospital and the battery ran out before I could print the diary. Everyone will therefore also be getting at least this page before I post the diary. If anyone reading this on paper knows anyone with web access, the pages are at:

http://www.mccannics.co.uk/john.htm

and this is probably the best way of keeping up to date. Otherwise, I will try to keep in touch, but it is difficult.

John was due for a feed at six o'clock, so I arranged to meet Mandy at the neo-natal unit after I had got something to eat. Before six, however, he woke up and was crying for food, so they called Mandy down to feed him. His demanding food is a good sign. It was also especially good from my point of view because I again avoided changing a particularly nasty nappy. When I changed him at ten o'clock he was clean.

Mandy's mum and dad and aunty Joan visited this evening and we went to see John at about eight. We should really have left him to sleep until his feed at ten, but the visit woke him up. He was a bit grouchy then and took a while to go back to sleep. He then wasn't very interested in his feed at ten, but the nurses didn't seem to bothered by this as he had seemed to have three good feeds today. They will cup-feed him at 2am so at least they will know how much he has had.

Because we stayed comforting John after the visit, it really got too late to arrange for Mandy to come home tonight. She was probably too tired to travel back anyway and should get a better sleep tonight. We have at least found that there is a room with beds on the neo-natal ward, so that if she does come home at night, she will still be able to rest during the day. Mandy is still keen on the idea of coming home tomorrow, but as I left the nurse had taken her temperature and it was almost 38C (100F). This might just be because the weather has been so hot today, but if the nurses are concerned then they probably won't let her home just yet.

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