Like I said in my last blog, I'm now in hospital. I was fine until about Tuesday night then I felt sick and had to have some extra oxygen. On Wednesday morning (before I came to hospital) I met my new home-school teacher. She was lovely and has taught someone with cf before, so was very understanding of everything that was going on. We talked about hat subjects I would be doing at home (maths, English, and science) and she also told me the days she was coming in the week. (Thursday afternoon and Friday mornings) which is great. 6/7 lie ins a week ;)
When she left we came to the hospital, in great hospital style there was no beds, so we had to come I through a+e. We were waiting in a side room (there was no beds in a+e either LOL) for 4 hours. Ward 85 is the ward for respiratory problems and cf. The nurses on here are like 2nd mums to me (or maybe big sisters) so I prefer this ward to any other. Thankfully my dietician is mint, and managed to speed someone's discharge up so I am happily on ward 85 :)
When I'm in hospital I'm on a drug called amonopholin (I don't know the correct spelling, don't cry), its a wonder drug for me. Although its a pain as I have to constantly have longlines/canulas (it can't go through my portacath as its to direct to the heart) and I have to wear ECG and sats probes all night when I'm on it. It does me the world of good, here's an example. Usually when I'm asleep my sats are below 90 and therefore I have to wear a litre of oxygen, but when I'm on amonofolin my sats stay above 98 all night WITHOUT ANY oxygen. My heart is usually fine so hopefully on Monday the doctors won't make me have the ECG probes from then on. My hospital admission so for is going okay though. I'm not too fed up yet haha
If you know me you'll know Disney channel takes up my whole life. I'm a Giant 7 year old. My favourite show is shake it up and in that show theirs a character called Flynn. About a year ago I saw on the CF Trust's Facebook page that he does a lot of walks and fundraising towards a cure for CF. When I saw he had twitter, naturally I tweeted him to thank him. He's only 10 and does great work for the foundation. He tweeted me back, followed me and told me to keep in touch:)
In 4 days I will have been on the transplant list for 10 months. Which has gone crazy fast!
ECG/sats probes- ECG is 3 wires attached to a sticker that is stuck to both shoulders and 1 on my hip. A sats probe basically reads my oxygen levels.. Just by simply wrapping it around my finger/toe.
Portacath- this is a small rubbery lump that is placed under the skin and put through directly to my heart. Amonofolin can effect your heart so it can't go directly too it. I don't really know how to explain amonofolin, I know that they use it a lot on people who have asthma attacks so if you have asthma you may have had it.
Anyways I hope everyone is well and having a good year so far! Lots of love, Liz. Xx