About Me

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Well I entered the world on 25th June 2010, the day after mummys birthday. That picture up there was one of the first daddy took of me. We were all fine and was home the next day. As I am now at 9weeks, I love being in my swing, on my play gym or in the bath kicking my legs around (ready for daddy to take me footie) I'm quite the dribbler!! I do love cuddles though :) I do have my screaming fits, excersising the lungs, I get passed from mummy to daddy then back to mummy till eventually I fall asleep, bouncing me does wonders. So I'm pretty much the same as every other 9week old on the block, only difference is I have Cystic Fibrosis. I will get mummy to explain it as best she can for you and will try to keep you as up to date with everything as we can. So here is my story.....

Monday, 10 February 2014

Update on iV's

Well the first few days went as good as they can, until the early hours of Wednesday 5th when mummy started being sick. She was very poorly for a few days and I got to go around with the nurses helping them and helping Paul the man who cleans our room and stocks all the hand gels and hand towels. I was very good at helping and everyone kept saying Paul will never be able to cope when I go home :) im sure he will. Anyway everyone looked after me while mummy couldn't get out of bed and they all looked after her too, including me. Friday nights dads night came so mummy went home to get some rest and decent sleep then I went home for a few hours Saturday. It was the BEST!! Auntie sarah and uncle Kevin came to see me and I had lots of cuddles with my levi, iv really missed him. Saturday afternoon mumsie noticed I was scratching my foot. It looked like I had been bitten so she put some cream on it but then noticed I had a few on my belly. When we got back to the hospital for my 6 o'clock ivs we showed the nurse. She said she thinks im getting a virus like mumsie had but getting a little rash with it. She took my temperature and it was 37.9, higher than my usual 36.5. So yep im coming down with something.  Great :( mumsie did ask if it could be medicine related as nanna lott had a reaction to medicine like this before, but no its definitely a virus.

As the night went on the temperature went up and the 'little' rash got not so little. By sunday afternoon my temperature was 39.9 and I was just like a big red blotch. I was so so uncomfortable. Sunday night I was sick. Yuck! I even managed to land some on mumsie, oops sorry. By now my rash had spread like wildfire and my hands and feet were starting to swell up, they really hurt. One of the doctors came in to see me and said the rash was basically my body having an allergic reaction to the virus I have. We just have to ride ut out. I was put on a drip over night to keep my fluids up and had regular checks every 1-2 hours through the night.


My temperature Is still really high and im in so much pain with this rash. Im so itchy its horrible, they have been giving me piriton to help with the itching and It does help a little. My hands and feet are so swollen today it hurts to do anything, hold a cup or crayon, cant even walk to the bathroom. Iv spent the day in bed in the same position pretty much all day, feeling very miserable. Not eaten anything today but have managed to drink and keep ot down. Go me!

This afternoon my consultant came to see how I'm doing. Putting the virus and rash aside and back to the reason im here. Im still coughing. Shes not happy. We are booked in for a bronchoscopy next monday and will be here untill at least then. No going home thursday now :( iv now got to have some more bloods taken as the blood taken Friday the laboratory left it too long to do the relevant tests on it and it clotted. Again. This has happened once already. They need to check my blood to make sure the levels of the antibiotics isnt too high to cause problems. So we donned some magic cream and took the bloods yet again. Hopefully third time lucky and they will get the results soon.

When my consultant was with me she gave me the once over regarding the rash. Turns out it IS to do with my antibiotics im having. The ceftazadime is apparently notorious for this sort of reaction. So they are changing that one now to a different one. Mumsie wasn't very happy at all, she asked about the meds at the weekend but was assured it was nothing to do with it. Anft who knows, had the laboratory look at my blood the first or even the secont time, maybe just maybe something would have been picked up and could habe prevented all this. I dont know, its just a maybe.

Iv been really up and down tonight. Iv not been having the piriton regularly so the itching has returned with a vengeance. It hurts really bad. So I had some more and had some paracetamol with the hope it would help. It didnt. We put cold wet tissue over the really bad parts which helped stop the burning for a while but it soon moved to another part. In the end mum asked to see the doctor to see of there was anything else they could do for me. So in they came with some ibuprofen and a different antihistamine which had a sedative in too and low and behold within a few minutes I was out like a light.... hopefully till the morning.

Fingers crossed tomorrow is a better day.

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