TrachKids.org

I suppose it was too much to hope that the letter from the Professor at GOSH would get done and sent the next day as promised. :sigh: I emailed Dr. P at the end of last week to see what he thought and to give him my version of the discussion at the appointment. I got an email back on Tuesday - a week after the appointment - to say that he couldn't move things further on until he received the letter. So, the rest of this week I've been phoning his PA to see if they've got it yet, and phoning GOSH to see if they've sent it yet. It turns out that the letter was dictated over a week ago, but it has not been signed/authorised because one of the surgeons is off sick and the Prof is filling in for him. I feel a bit guilty about chasing him up to sign this letter when there are emergency and planned surgeries which are much more important in the grand scheme of things, but my priority is Angus and getting what he needs. I'm fed up of things not being straight forward when they should be. I'm more than fed up of having to check up on progress and chase things up all the time, every step of the way. I have learnt not to trust what busy people say they will do - and I hate having to give up my naturally trusting nature.
 
I had a chat with one of my patients at the start of the week. I've seen him for a number of things over the years and know that he is involved in management within the NHS. So I asked him if he knew anyone on the board to have a chat to them and make our case a little more personal. He said to email him with the details, which I did, but I haven't heard back from him either. I know it's only a fortnight, but all these delays add up - the fact that we've only got this far since Feb 2007 shows that!
 
Angus is doing OK at the moment. He has a major snot nose going on, but it's not making him ill. He's reached his target weight of 12kg so we've reduced his tube feeds to 300ml/300kCal per day again to encourage oral feeding. Since then he's been making bit more progress with eating. He ate 2 tablespoons of puree yesterday which is a first for him - at two separate sittings. He's been eating thin sticks of cheddar, tomato ketchup (I made my own so a bit heavier on the tomatoes and lighter on the salt and sugar), butter and Marmite. He's also been drinking more of his chocolate milk, but the Feeding Clinic want me to start buying low cal chocolate milk so he doesn't fill himself up with drinks and starts getting to grips with solids more.
 
He's heavily into Power Rangers Mystic Force and has been watching Disc 6 of the box set endlessly. I've kind of fanned the flames by buying him 3 different types of "Morpher" from eBay. He loves the Mystic one even though it doesn't work electronically anymore. He's been "rangering up" at every opportunity which is cute and funny.