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.....

Friday, 31 January 2014

Mumsie woo says I'm her real life superman...

Thursday 30th January

So today started at The Royal Brompton at midday, I've not eaten much at all only a few spoonfuls of daddy's cereal and I wasn't supposed to even have that... Tut tut! At 12:30 the nurse came and put the magic cream on my arms AND my legs, wasn't sure why but obviously know now. Then at half 1 she gave ge a sedative... Superman powers mum and dad said! The sedative didn't make me fall asleep but it did make me a little woozie and I couldn't walk without falling over. So then 2 o'clock they took me to try and get the long line in. One doctor tried twice on one arm then once on my leg by my ankle... Hence the magic cream. But after 45minutes of torture and pain they gave up. He then got a different doctor to try my other arm. He drew on me in pen where my vein was, did he get told off for getting pen on me... Ooh no he didn't, he even drew on mumsie just for fun and still didn't get told off. It did make me laugh. He managed to get the long line in my arm and all the way round and round my head, down to my foot, up my other leg, round my tummy 5 times and back up to my chest. So mum says anyway. Dad says it just goes up my arm to the top of my chest! I had a chest X-ray done to make sure it was sitting in the right place then we was all done. At that hospital anyway. Everyone said I was so brave I was like a real life superman - I just wish I could fly!! We left the Brompton about 4ish and set off for whipps cross.

When we got to whipps I started to remember everything from last year, we're even in the same room. Dad stayed for a bit then went off to football training. I finally got my first lot of IVs at 9.30pm, and all the memories of last year came flooding back. I was scared, it hurt me so much before. The nurse gave me the ceftazidime through my line which took a few minutes and I got so worked up thinking it was going to hurt like last time that I didn't realise it didn't hurt at all. Then she hooked up the tobramycin and that takes an hour. So by 11 o'clock after a quick video call to daddio I was ready for beddybies and so was mumsie. The nurse came in at 1.30 to do obs then 5.30 for my next lot of IVs. I slept fine, not soo sure about mum.

Friday 31st January 

Mumsie didn't sleep well with the late bed time IVs then really early ones so has asked if we can alter the times a bit so we might get a better sleep. So instead of 1:30pm for the ceftazidime which takes about 5min, then 9.30pm for the ceft AND the hour one and then 5.30am for the ceft again - which I didn't want to go back to sleep after - we should have it at 10am, 6pm for the long one and 2am again so hopefully should get some better sleep tonight. Doctors came round first thing and the new plan is a week of the IVs then if there has been no significant improvement made by next Thursday/Friday then I'm going to have a bronchoscopy to see exactly what's going on in my little lungies. My lunchtime IVs went through no problem, I now know they don't hurt, they're just really cold and I can feel it going in my arm. Weird! Physio came round this afternoon and I played some really good blowing games with them, it really made me cough well. Also done a cough swab too. 

This evening I had to have some blood tests. I had the magic cream on my hand and they took about 5 tubes of blood from me. It did hurt me a bit and I screamed to start with but then It was all ok and I just sat and watched them do it. Superman strikes again :)

I seen some familiar faces today, funnily enough the nurses seem to remember me from last year too, not sure if that's a good thing or a bad thing though.

Friday night is boys night. Dad is staying at the weekends to give mum a break so she will go home tonight and come back to see me tomorrow. I would say I'm jealous but I get to have a sleep over with dad so I'm happy. 

Just waiting for my last lot of IVs then off to bed and mummy can go home.

Night all

E xx

                                All magic creamed up :)

                                    Long lines in, getting it all secured

                                              Thumbs up :)

                                     All done and bandaged up.

                           All tuckered out x

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