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.....

Wednesday, 5 March 2014

Home sweet Home

After a few really rough days I started to turn a corner. Dad kept up the piriton every 4 hours religiously and that really helped keep my itching at bay. I was still unable to walk until the Saturday but slowly but surly I picked up, back to eating, was able to hold my cup and make a fist without it hurting and by Sunday the lumps on the bottom of my feet were nearly gone and I was running around causing havoc just how mum and dad like it. 

After my bronchoscopy was cancelled last Monday due to this virus/reaction it's was all set for the following week, Monday 17th. However when our nurse called ahead to the Royal Brompton Sunday evening to make sure all was ready for us we was told as it stood they didn't have a bed free for us and had to call back in the morning. Monday morning there was no change. Mumsie woo was none too pleased. Not only had this been put back a week already they was now putting it back another day or more. Mum spoke with my consultant and they agreed there was no point keeping me there, I'm being pumped with antibiotics that are having no affect at all on my chest so I may aswell have my wiggly worm removed and go home and wait in comfort for the Brompton to call when they have a bed free for me.

I was soo glad to get that line out and go home, we all had the best nights sleep that night for a long time. However Tuesday came and went with no call, as did Wednesday Thursday and Friday. So Monday mumsie called them to find out exactly what was going on, glad they decided I could go home and wait as that would have been another week wasted in hospital waiting for them. Eventually after being put through to this person and that person and then waiting yet again for a phone call back, we got a date of Monday 10th March, 4 weeks later than when it should have been done!!

A week and a half after leaving hospital and my cough has pretty much gone. Great! Will we ever get to the bottom of what made my chest so bad? Or has it been left so long the strong concoction of antibiotics I was on has, after 5 weeks, cleared it meaning we won't know if I've had a different infection to what they thought or not? Who knows. All I know is that couple of weeks spent in hospital was a complete waste of time, all that came from it was mumsie getting poorly and me contracting a horrendous virus OR allergic reaction to an antibiotic that in actual fact I probably didn't need. End result was a waste of 2 and a half weeks and leaving the hospital with my chest sounding worse than when I went in.

 Will update on the bronch.

E x

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