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

Same time next year?

So centre parcs was THE best ever... Had a fantastic time. We played golf, rode our bikes, played badminton, tennis, went in the arcades, loads of swimming. It was fantastic. However, I'm still not doing very good. My cough is worse and needs to get sorted. Who knows what damage it's causing in there. So in we go for another 2 weeks, just like this time last year. But I'm not going to book my bed for next year just yet because I'll be stronger next year. Thursday 30th January I have an appointment at The Royal Brompton to hopefully get a long line in then we will be going back to whipps for the 2 weeks. 

It sucks! 

CF sucks! 

But I need to and WILL get better, then it will be me kicking cf's butt!!

Ethan x

Sunday 25th July.....Im 1 month old....

Nothing to report, just thought i would share some photos with you....

wrapped up nice and warm

day 1, a few minutes old  

cuddles with auntie kelly

just me & mummy for the night in the hosp

'ahhh' 27/6  2days old

me and mummy 3rd july 1wk 1day old

'oooo' 4th july

wow its hot 8th july 1w6d

9th july 2weeks old today

Update from January's joint clinic...

Well.... Bad news, my weight has dropped slightly still I'm now 15.6kg but docs really don't seem to fussed about that. My cough however is still here and not very nice. They have decided to put me on yet another antibiotic for 1 month called Septrin. Docs have said I need to make a significant improvement within 2 weeks or I may need a bronchoscopy. This is where they put me into a deep sleep and put a camera into my lungys to see exactly what's going on and maybe give them a little clean. Depending on the outcome of that depends on the next step.

So a week and a half into the Septrin and mumsie says my cough is drying up and even I can tell I'm definitely not coughing as much. So she tells the doc that it's all going in the right direction. YAY :) However, by the week after I'm coughing bad again. Really bad. I'm coughing up green gunk which is yucky and it's even making me cough in my sleep.

So today is Thursday 23rd Jan and tomorrow we are going to centre parcs for the weekend. Today mum has spoken with the consultant at whipps and she is thinking I will need to go in for IVs again :( this really upset mummy as it makes everything all seem real again. Reality kicks in. 

BUT, they are letting me go away for the weekend and see how I am when I get back and decide what to do then. Hopefully they will do the bronch first and actually see what's going on before taking me in for the IVs. 

Fingers crossed all the running around, fresh air and exercise will pay off and help shift this cough...

Roll on centre parcs :)

E x

The start of 2014...

Happy new year!!

Last night we had auntie Sarah and uncle Kevin round to see out the year, we played some games, set off party poppers and sang that same song like last year where you link arms. Weird! We also let off some Chinese lantern again, daddy got his caught in next doors tree and we all thought it was going to catch fire... Ahh!!! But it didn't, it did take flight. After a very active late night I was still up at 8 this morning, but stayed in bed watching tom and jerry... My favourite. 

So since I last updated what's happened.... I had a brilliant 3rd birthday. Went to auntie Vicky and uncle Peters for a few days, came back and had the best party ever. All my friends came in the morning and then the family came for a BBQ in the afternoon. Then a few weeks after Jessie woo had her 1st birthday party at grandad and nana lotts house. All good fun. September I started pre school. First two days were great, i really had fun playing with all the new toys and other children. Then it was the weekend. Come Monday I just wanted to stay at home with mummy, I didn't want her to leave me. But she did! Boy did I let them know I wasn't happy about that. I screamed and kicked and banged the doors watching mummy walk away... Why? But you know what, I soon got over it and enjoyed the rest of my time there. Until the next day! By Thursday I realised just how much fun I had while I wasn't under the watchful eye of the mumsie! Those three hours seemed to fly by and before I knew it, mummy was back and it was time to go home. But I wanted to stay... And from then on I didn't look back. I have made some fantastic friends and learnt lots of new skills. Think mummy secretly enjoys the few hours peace....Well that's when she's not looking after the Jessie monster.  

                                                My first school photo  

                                

Happy Halloween from us

Christmas was the best yet. Throughout the whole of December, Santa sent one of his elves to keep an eye on me to make sure I'm behaving myself and every night he would fly back to the North Pole to let Santa know what I had been up to in the day. Then every morning before I woke up he would fly back and hide in a different place for me to try and find him. And there he would stay until I was back asleep again. Eventually Christmas Eve came and I finally gave in to sleep at 9 o'clock and when I woke up it was clear to me that Elvis -the elf, had told Santa exactly how good I had been. Walking into the front room I was hit with lots of presents under our tree. I made short work of unwrapping them all and then we sat and went through each and every present. Was great. We then went off to meet grandad, auntie Sarah and uncle Kevin at nannys home to give her her presents then back to grandad and nana lotts for Christmas dinner, dancing, singing, fun and games and even more presents for everyone. Boxing Day was spent at grandad Shiloh and grandmas with uncle Paul, auntie Vicki and jake, jack and rosa and nanny and pops. We had more presents, another Christmas dinner and played more games. What a fantastic couple of days. 

                                  Mince pie, chocolate fingers and glass of milk 

                                    for Santa and some carrots for the reindeer

                          

                                  Merry Christmas from nanny and I x

                           

  Since I came out of hospital in March generally I've been well. The odd cough and cold but nothing too bad. However, for the last month I've had this nasty cough. It's really horrible, makes me cough up gunk which I have never done before, it's not nice. Once I start coughing I find it hard to stop, it makes my throat really sore too. Good news is the two cough swabs I've had done have come back clear so hopefully it's just viral but taking a lot longer to clear. I had one antibiotic but it didn't make any difference, in fact it seemed to get worse. So the docs changed it and I'm now halfway through a course of ciprofloxacin. I still have this awful sounding cough and my throat still hurts but I'm definitely not coughing as much. As I type that, I actually have a coughing fit!! Ironic!

Anyway I have clinic in two days time, it's a joint clinic with my local consultant that I see every two months and my wonderful team from The Royal Brompton. So it's two consultants, two or three physiotherapists and the dietician, along with the usual height/weight checks etc. So fingers crossed they will come up with a plan to help me clear this awful cough once and for all, as it's really starting to bug me now!! 

The other hurdle I hope to get over on Friday is my weight. At Novembers clinic I had only gained 0.1 of a kilo and the doc wasn't happy. So mumsie and dada have been doing their best to try and fatten me up, but I really don't seem to have much of an appetite. If I'm honest, I'd rather do anything else than eat. But they have their ways of bribing me :) So in November I was 15.9kg, hoping I've gained otherwise the doc did mention something about supplement drinks I think, but mumsie would rather me eat than have them. We'll see...

Also this last few weeks my lovely Levi, the cat, has not been too well. I have taken him to the doctors a few times, held his paw when they shaved his hair to take blood cuddled him through all the injections but hopefully he is on the mend. I have to take him back in two weeks for another checkup. He's going to be 12 years old in a couple of months so has to be better for his birthday.

Well that's about all for now so over and out from me...

Ethan xx

 

                                        This is me and my cousin Jake

                             

 

                                   Me and the Jessie woo just chilling       

                     

                                  My bestest friend Nik, we found a

                                          GRUFFALO!!!