Kids back to School

Well two of them are back, one to college and one to school, so that makes it very peaceful indeed.
Geoff won't be going until they find more funding for his Schooling and as the panel doesn't meet for another 2 weeks, it looks like the New Year for him.
Mind you with the appointments at hospital coming up, he wouldn't fit much School time in.
At least we have a date for his button to be put back in, the same time as his CT-Scan. So he will only have to go under a General once in the week, which will be bad enough.
Oh and the appointment that I couldn't remember at the end of November is with the Cleft Palate Team, lets wait and see what that entails.
Thats all for now.

Of Things To Come ( and I don't mean Christmas )

The NG feeding is ongoing but he don't like it, no he don't. I have to make sure the flush water isn't to cold as it makes him do a little dance. We've had him on a 50/50 feed today (paedasure and water), back on full feed tomorrow
Hopefully his button will be put right on Monday. come on Tuesday at the latest please. Though I don't think he is going to like them doing it as I think they will have to stretch the hole, though no doubt he will have a local. Failing that it will be a full General and into surgery ( god it sucks and keeps sucking)
Because we have appointments flying out of the woodwork, i.e appointment with the Neuro guy on late Thursday with the follow up CT-Scan on the following early Monday. we will have to stay up 2 nights due to the early CT-Scan and 2nd night due to general anaesthetic, and yes we have considered staying up from Thursday till Tuesday.
The general will be no fun at all for him as we have to restrain him as they gas him. Just hope they don't have us hanging around in the pre-op room before they gas him, like they did last time.
As soon as we go past outpatients we start to get trouble, cos he knows he won't like whats coming and we will get from him : Why, repeatedly. and how can you answer that? To make you better doesn't work as we have to keep coming back to Great Ormond Street !
On a cheerier note my Daughter is planning her 13th Birthday party for next June, not at home as we upset the neighbours at the last party she had (don't know if we are the reason that they are moving house ?). Well she is not going on about Christmas now !
Oh and another appointment the end of November, what it is for slips my memory and can't be bothered to open up my Calendar program at moment.
With the hour back tonight I shouldn't have to worry about staying up late. but I don't think my 5 year old son understands BST and GMT.
At least the Half Term is over as could do without the kids fighting during the day and evening LOL.

Button Problems

This was my 4th button change so wasn't expecting a problem, but it all went horribly wrong.
I tested the water and it was obvious that is had burst (only been in 6 weeks), so I got the new one ready and had his sister holding his hand.
Withdrew the old button and tried to insert the new button, but it would not go in. I think it went in about 1/2 cm and wouldn't go anymore .
Well I started to get hot and stressed and after a few tries decided to put the ng in the hole a give it a rest and take advice from the hospital. They suggested we leave it for an hour as he had recently had food (wish I had been told before or I would never of done a change after a feed). So an hour passes and I try again, My O/h tries again and we have to admit defeat and took more advice from Great Ormond street this time, and they said that it would be okay to leave the ng in overnight and get hold of a smaller button the next day as the local Hospital didn't have any mic-keys of any size in (Great Ormond street did suggest that our local hospital get a taxi to go up to London get a new Mic-key and bring it back, not really likely was it).
So he goes overnight without his usual feed. sleeping in our bed, as he does when not feeling well.
In the morning when the nurse arrived with a smaller button, we found that, that would not go in either ( a bit late no doubt). Unfortunately the nurse hadn't bought a NG feeding tube with her and as they were busy she didn't get back to us till 1700hrs, so that was 24 hrs with hardly anything to eat. We then had the joy of putting an NG tube down a kicking and screaming 5 year old, who didn't remember that was how he was fed for the 1st year of his life. Well my O/H managed better than me to get it down, and he was not happy at all. So we settle down for another night with him in our bed with a glucose mix to rehydrate him and start feed again tomorrow. Why do things always go wrong towards the weekend ? Hopefully get into Great Ormond street on Monday or Tuesday and get his Button put back in. Oh and his Oxygen turned up this morning, won't start that tonight, bit defensive about his nose at moment and I don't blame him as I once had the pleasure of an NG tube and didn't enjoy it one bit.