Cycle 2 - Day 23 A Strange Day

Today has been a bit of a funny day. Niamh was okish in the morning, she did a bit of crawling and standing, but not much else. By 11am she was quite tired and just wanted to watch TV which is unlike her in the morning.

Niamh is still on continuous feeds at the moment as she doesn't seem to be able to cope with boluses.

(Continuous feeds means that she is feeding through the tube most of the day but on very low dosage per hour. Boluses are when we can give her a larger dose within an hour or so, which is great as it means that she does not need to feed all day long.)

Anyway despite being on continuous feed she still vomited around lunchtime and the tube came out again. The community nurses were fantastic and came within 30 minutes to replace it. Poor Niamh got very tearful when she realised she needed a new tube.

Then in the afternoon she slept a little but on the whole was very unsettled, touching her head a lot and crying. As Niamh is unable to speak at the moment, it is difficult to know what it is wrong. Was her head sore or itchy? Was it her tummy? Or was she just feeling low?

By 4pm we called the hospital for advice, did she need to go back into hospital or could we give her codeine and assume that she was in pain somewhere. By the time the oncologist called back (hardly 10 minutes later), all was packed ready to go (very efficient these days). The oncologist said that her gut may still be hurting due to the chemotherapy and that codeine was a good plan. He advised us to wait a bit and if we were still anxious later in the day then to take her into hospital.

Niamh had codeine at 4.30pm, by 5.30pm she was the most happy we've seen her in a while. She wanted to show off her crawling, standing and climbing. She kept going for a good few hours and settled peacefully to sleep around 9pm.

So not a good start to the day but a great end.