Time Off Whilst Out = Unsuccessful . .

Past couple of days I've not quite been as happy as I was. I've been a bit lethargic and quieter. Mummy knows there's something not right when I just wants to lay with my quilt. You know me though, I'm not showing what's wrong in my bloods or in myself just yet.
Today me and mummy went to Meadowhall to see how things would go with my time off TPN whilst I was out my bed. It didn't go well. Even whilst I was on my TPN my sugars had dropped but mummy carried on with doing the change in bags to time off TPN and onto glucose. After just 30 minutes my sugars had dropped a lot lower so we had to finish off and head back to the car. On the journey back, it's only a 15 minute journey, we had to pull over to check my levels again. Still low! I was very pale, breathing faster and my breathing was noisy too. I had also gone very cold. It took us a lot longer than usual to get back because mummy had to keep checking my sugars. As soon as we got into my room phil said to switch back to TPN and check things again. My colour started to come back but my breathing and coldness took a lot longer to settle. In the end it took up until half 7 for things to be stable. Not good. We're not sure what happens now, if doctors will want us to try again or if they're just going to tell us it's not worth it. We'll just have to wait until ward round tomorrow.

Mummy did 'a day in my life' on my facebook page today. It's all pictures of the things I go through everyday. Some days are worse, today wasn't too bad. It's a bit difficult to put it on here but I'll have a word with mummy and see if we can figure it out tomorrow. My facebook page is Harvey's journey - lets get his story seen. Feel free to take a look and like my page, it's another way of hopefully getting my story seen and making awareness too of my condition.

One good thing did come out of today though, mummy got me a ball pool from meadowhall and I love it! Just need more balls for it because 2 bags has only just covered the bottom.