Yesterday really knocked me back. Last night I spent the evening just laying down with my quilt and watching tv. Not long after my meds I fell to sleep but was restless and breathing fast. Mummy checked my oxygen levels and they were low so had to go into oxygen for the night. Once I was in it I slept a lot better up until 7.15 this morning but was still breathing faster than usual. I've had to stay in oxygen today with my breathing being fast and I was nasal flaring too. I also needed some of my extra pain relief this morning because I was in quite a bit of discomfort. I've still being laying down a lot on and off throughout the day and getting upset at times too. My consultant came to see us this morning to discuss what had happened yesterday whilst on my time off TPN. He isn't sure what is causing my sugars to be an issue whilst I'm out and about, he said it could be my liver and it worse than what we thought. The other possibility is that I'm brewing something and I never show it straight away so we'll just have to wait and see. He said that would also cause me to need a liver transplant. He wanted me to have a good day today so not to have time off and to try again tomorrow. He said today I'm still recovering from the hypoglycaemia so to just continue as we are and see how things go. He also wants mummy to try taking me out again after the weekend but not give me time off, it's to see how low my sugars go whilst I'm out and on TPN. If they are an issue again then mummy will have to give me a sugar bolus (70 mls of glucose straight into my line) and get me back straight away. Hopefully things will be better next time.
Mummy got my ball pool out for me today but I wasn't up to it and only managed 30 minutes before I'd had enough and wanted to lay down. Fiona and Laura took me into the snoozalin today, when I got back I was tired so had another lay down. I'm just in my bed now with cbeebies on and playing with bits of Lego, various cards and some play eggs that I love!
Mummy told me about three very thoughtful and special girls today, Chloe, Aimee and Skyla. They got their granddad to write on my Facebook page because they want to give their Easter money to me to help get any things that I need at home. You are very thoughtful and I am honoured that you would give your Easter money up to help me. Thank you so much xxx