Off I went down the M62, yet again
I decided to put the extension tube to Zack's Mic-Key button (the bit that we attach in order for the food to go down) in to the steriliser. Well I thought it would give it a really good clean. It did. It also melted the top so we could no longer attach the syringe. Bearing in mind we were only given one of these, mild panic set in, it was Sunday night and it wasn't like I could pop to the chemist and pick one up.
I know I'll phone the local hospital. Nope they ain't got one, why not try Alder Hey. Bingo. A nice nurse in one of the wards found one for me and so off I went down the M62, yet again. At least now I know not to steam clean the tubes but maybe they should come up with one that doesn't melt in the steriliser.
We went to see the dietician the other day. Zack got weighed, he is still the same but 2cm taller than last time. I am sure the scales aren't right, I mean he is getting really heavy to lift and is starting to hurt our backs. I also had the discussion with the dietician about his blended diet. She still couldn't recommend it even though he's stopped throwing up during every meal.
I asked why. One of the reasons given is that Zack wouldn't always be getting his nutritional needs met through a blended diet. I said I didn't understand the point and the dietician explained that through a blended diet you cannot be sure of the calorie content. Well hang on, does every parent feeding a child that eats normally count the calories or even know how many calories their child should have. Nope. They just feed them. I on the other hand know how many calories Zack needs, how much fluid he needs and I give him a diet that is probably healthier than most children as I can get all sorts of veg, and good things down his PEG.
Anyway I just nodded, explained all of the above and said it was a shame more health professionals couldn't get on board with this method of feeding. We agreed that I didn't need to come to more appointments just for weighing as he usually gets weighed at the hospital and that if I need to see her I can just get in touch. Works for me. And off we went back home to some blended cottage pie. Nice.