Pushing on

We haven’t been home as much as we wanted this week for various reasons good and bad. Good: on Tuesday we all went to the GOSH Christmas party, where Isita did a lot of dancing.

Bad: on Thursday they had to reinsert the nasaljejunal (NJ) feeding tube into her small intestine – every so often she retches it up. However before that (good) she met Father Christmas and some reindeer.

And then yesterday (very good) she met some pilots from the Red Arrows and is going to be on TV again. Marta said they were incredibly handsome. Jamie and I had to stay at home as he has a tummy bug and is banned from the hospital for 48 hours (bad).

Tummies – what a mystery they are. The doctors can’t say how long it will take to heal the chemo-related nerve damage causing Isita’s stomach not to work, or even whether this will ever happen. Every so often in Isita’s wretched journey we bump up against the limit of what medical science can achieve, and this is such a time.

The NJ tube bypasses the problem and we pray it will make her much more comfortable. There are signs that her intestines are starting to absorb the feed. What comes out is browner than before and less comes out than goes in (it is all weighed). But every time she is sick there is a danger of the tube coiling back into the stomach.

So take last night. Isita was sick and her retching was curling an inch of tube out of her nose. Had this dislodged the end from its place in her intestines? There was no way of telling. This morning’s feed hurt. But why? If her vomit were milky it would mean the tube was displaced. We pushed on. We had to. She was sick – the vomit a bit bily a bit milky, so maybe OK. I halved the rate and pushed on some more. She’s OK so far. We are going to put the pump in a backpack and go to the movies. Wish us luck.

5 thoughts on “Pushing on

  1. Am so thrilled that you are out and about .Loved the school friend photos, the dancing and Santa.Hope the good stuff is outweighing the bad . The stomach obviously a major problem, but glad she has the energy for dancing and outings.
    Might catch a glimpse next Thurs, but you’ll probably be on the razzle somewhere .

    Happy Christmas to you all however your day pans out.
    Much love
    Henrietta xx

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  2. What a busy schedule!! We love you all!! and we wish that Christmas will bring nice surprises!!
    😍😘🎄🌟

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  3. John, please tell Isita that Max was very, very impressed that she met pilots from the Red Arrows! We love seeing her and Jamie smiling…Love to the 4 of you

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