Bronchoscopy finally done... 10/3/14

This morning I had breakfast with daddy, he went off to work and auntie Sarah came to pick me and mummy up. We drove back to Sarah's then got a bus, my first ever bus, went down to the train station  and headed off to the hospital. Two trains and a little walk, well piggy back for me, and we was there. 10am we got there. The morning was pretty darn boring, they done my weight (16.1kg) and height (99.8cm) and that was basically it. A few doctors came in and spoke to mummy while me and Sarah was playing games and doing puzzles then finally 3 o'clock I was wheeled down on my bed to the theatre. That's where Sarah said goodbye but mumsie came in. I sat on mums lap and she put a mask like my nebuliser over my face, I took a few deep breaths but it tasted really nasty so I tried to get it off but..... I was asleep!

An hour later I was in recovery with mumsie waking me up, I was soo tired but chatty, talking about seeing my friends Nik and Ryan tomorrow and going to feed the ducks, I even remembered Ryan has a baby brother called Alfie. The nurses seemed pleased that I was coming round well and didn't seemed confused or anything so the wheeled me back up to my room and back to auntie Sarah. 

My consultant was already there and waiting for us, mumsie spoke with him while I went back to Sarah. Doc said it wasn't bad but wasn't brilliant either. He did find some gunk in there which he managed to suction most of it out but my airways looked good and wasn't inflamed. So now we just have to wait and see what, if anything grows in the lab. In the mean time they have started me on 2weeks of ciprofloxacin, typical when it's nice and sunny and this antibiotic makes your skin more sensitive to the sun. Better get the sun cream out. On the upside they have given me it in tablet form not liquid :)

The next 2 hours wasn't too good, I was very upset at everything and screamed and cried for 2 full hours. I wouldn't let the nurses do my obs at all and the kept telling mummy that if I carry on like this I won't be allowed home, my blood pressure was really high. Luckily the nurse listened to mummy and backed off for a bit to let me calm down. Eventually I did. Good job as our chauffeur was here to escort us home, grandad trevie :) 

I had missed dinner by now but mumsie had some bits for me to eat, she then got me some jam on toast which I couldn't have eaten any quicker. So all that was left to do was a full set of obs and take my cannula out then we can go.

8pm and my cannula is out, my clothes are back on and I'm in the car. I let grandad get ooooh at least 10 minutes down the road before I made him pull over for a wee.... Well I had been really thirsty. We had a lovely drive home seeing London lit up at night and I stayed awake the whole way. 

Home before 9 to daddy and Levi, my cat, bite to eat and in bed by 10. 

What a long day...

                       Messing around pretending to be Rambo

                  In my stunning dress ready to rumble

My super daddy...

With Mondays bronchoscopy in sight my amazing daddy has decided to try and raise some money for the cf trust. He and his friend have decided to sign up for a whopping 100mile cycle from London to Surrey on the 10th August this year. Something tells me they had better get some training in, it's not just a cycle round the block. I think padded shorts will be a good investment for them both :-)

So if any of you would like to support my daddy, encourage him over that finish line and sponsor him which in turn will get me and so many others closer to the cure we deserve, here is his page. Any donation no matter how big or small will be greatly received.

www.virginmoneygiving.com/chalkyraw

Thank you from daddy and a bigger thank you from me. It's people like you, sponsoring people like daddy, that are getting people like me closer to a better, healthier quality of life.

Lots of love,

Ethan 

XxX

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