Had a good nights sleep last night. Needed a bit of oxygen at the start of the night but remained in air for the rest. Woke up a bit early this morning because it was noisy so I had some more sleeping medicine to help me settle back off. The day started for me at 8, straight away I had my Lego and cbeebies on. Whilst mummy was weighing me my teacher turned up so once I was dressed I did my school work for an hour. I enjoy my sessions with her. My consultant came to see us today, he decided to try time off TPN because dioralyte was unsuccessful. When home TPN is needed the doctors like to get you down to between 12-16 hours of TPN and the rest of the time off. We tried time off a while ago but my sugars are a big issue. Back then I managed 20 minutes off before my sugars dropped, now it happens in just 3 minutes!! I have always had constant TPN because of this. Long term constant TPN isn't good for you, it completely bypasses the digestive system which causes problems with your liver. I already have some degree of liver damage which my body is coping with at the minute. To try time off today in replace of my TPN I had a bag of glucose running instead for two hours. We wasn't sure how things would go. At first my sugars dropped but after an hour they had come back up. We had to check my sugars every half an hour for the 2 hours I was off TPN. My last sugar we did had dropped again but I was due to get connected up again away. Overall it was a SUCCESS!! We're not sure what the plan is with it yet but because I managed it today we will probably be told to continue over the weekend and see how things go. Only thing with doing this is the increased risk if line infection from accessing my line more. We've thought of ways around it though so if its decided to continue then we can make it work.
I went in the snoozalin today with Sarah and Charlotte. I had a good time. I've not done much today, just watched tv and played with a few different bits. Only 2 more sleeps until I see my family. Daddy, Dee Dee, Ellie and Taylor-Mae are coming to stay the night. It's Dee Dee's birthday this weekend so we are all spending the weekend together. It'll be lovely and we can't wait :)