Another day. Another hospital. Another Anaesthetic. All in a day’s work for Daisy Doodles. This time we are at The Royal Hospital for Children, Glasgow. What a mouthful. It was easier when it was Yorkhill. I love this hospital. She had her chemotherapy here and her hip spica put on here. She has been very well looked after here. Fabulous people. Especially the nurses. I bloomin love nurses.
Daisy gets all her nutrition through a tummy PEG (percutaneous endoscopic gastrostomy) tube. Today, Daisy has been getting this changed to a PEG button. They knocked her out, put a tube down her throat with a camera and then pulled the PEG tube back out through her mouth (well that was how I understood it anyway). Then they put the button in. The button is basically more discreet and can be changed without the need for an anaesthetic. Hopefully she will be less likely to tug on it as well. Here are the before and after photos:
Once again she has been a wee champ and is now happily watching Mr Tumble on the iPad.
If you had asked me 2 years ago if Daisy would still be tube fed at the age of 2, I’d have said don’t be ridiculous. I naively thought she’d get the hang of this eating malarkey. You’d think it would be a survival instinct. When she was a baby, once they had confirmed that she had a safe swallow, albeit a weak one, she would suck about 50mls of her bottle. Then she had chemo and didn’t want anything in her mouth at all. Daisy hasn’t learnt that she is able to do something herself to stop the hunger. When she gets hungry, we have always come along and filled her up. She needs to learn that eating will achieve this. One way of doing it would be to starve her. But she is not big enough and would lose too much weight. The approach we are taking is that she will watch her peers and get the hang of it.
She is starting to taste more food. Some days she likes chocolate custard. Some days she doesn’t. Much like your average toddler. Her nursery hours have been changed and she is now in over lunchtime and sits and eats with the other children. This is having a really positive effect. She is enjoying watching the others and is definitely trying more food. Hats off to the nursery staff and all her wee pals there; they are fabulous. Yesterday she watched everyone else get their food and actually looked round to see where hers was. Progress!
I am hoping that when we start to wean Huxley, she will show some interest and perhaps we can wean her at the same time. Fingers crossed!
Huxley is getting mightily peeved at all the blogs about Daisy. He says I’ve to keep my eyes peeled as he is going to wow me with something awesome when I am least expecting it so there is a blog about him. Watch this space…