About Me

My photo
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.....

Tuesday, 12 July 2011

Annual Asessments...

The coming of age.....being the grand old age of 1 I had a few different tests etc. I went to Great Ormonde Street Hospital for a lung function test. This was a repeat of the one I had back in September. I was given a Sleeping Syrup that induces a deeper sleep and they got on their way. Was exactly the same as the last one so at least mummy and daddy knew what to expect so was a bit easier on them. I had one long sleep that day :) but was back to normal the next day.

Next on my list was a bronchoscopy and a CT scan. The bronch I had last year but the ct scan was all new. It still didn't make it any easier on mummy and daddy when they took me down and I was GASSED!!! haha, sounds evil aye!! Just messing, although I was put to sleep with gas. It was a good hour and a half before we were reunited. I had a bandage on my foot where the cannula was and 2 little ones on either arm where they took blood. Rather that than they try and take the blood when I'm awake. So after I come round fully we went back up to our room where I had some lunch, I was just a tad hungry seeing as I hadn't eaten since mummy woke me up at 6am...Anywho, professor Bush who carried out the procedure came round about 5:30pm and gave me the all clear to go home, said everything looked great but obviously cant tell fully until they get the full results from the lab in a few days but he sounded pretty pleased! GO ME :)

2 days later mummy spoke to Katie my cfns (cystic fibrosis nurse specialist) and she said it looks as though the washings they took from my lungs were growing 'something'. I bet its that dam Pseudomonas! The next 2 days mummy was a nervous wreck, seeing as daddy was away training for work and my consultant had mentioned me needing to go in for IV's dependant on Mondays bronch. I have already had 3 courses of anti biotics for pseudo and they were reluctant to do a 4th. Pants!

Friday Katie called with the results....Clear!!! I know... I know how can it be clear, she said it was growing something. Well turns out it wasn't and there is nothing going on in there.... NO PSEUDOMONAS!!!! Now baring in mind I had the bronch 4days into my neb free month its anyones guess as to if i really have kicked it or if its going to come back this month. Doctor O'Callaghan from whipps said I don't need to go back until September now but I don't think mummy is very happy about leaving it that long so can see something happening at the end of this month, even if its just a cough swab....

Well that's us up to date for now anyway,

E x

No comments:

Post a Comment