Happy easter

Happy easter everyone. Iv had a wonderful couple of days and more to come. We had a lovely easter party with my friends at darcys house with a fab easter Egg hunt on Friday. Saturday I was round grandma and grandads and had another little easter Egg hunt, today (Sunday) I woke up and found the easter bunny had been to my house and hidden some eggs. After physio and breakfast were off to grandad and nanna lotts for dinner then to auntie Annette big birthday bash tonight. I'm looking forward to getting my groove on then. And to top it off tomorrow daddy is off work and we are going to auntie vicky and mad uncle peters for the day. I LOVE it there. What a fantastic weekend.

Hope yours is as good as mine :)

ETHAN xx

Bronchoscopy results are in...

Thursday 10th April - clinic and bronchoscopy results explained in non doctors words!!

Good news, mums been going on at me to eat more and put on some weight and I have. I lost a bit being in hospital when I was so poorly but I gained it all back and more. I'm now 16.4kg and I'm a couple of centimetres taller too. Happy parents. 

All in all at this clinic appointment everything was fantastic. Chest was clear as a bell, tummy is still good and I even done my own cough swab completely by myself, held it on my own and done it with no help. However, this wet fruity cough is still hanging around no matter what I do.

The results from the bronchoscopy actually came back rather good. My vocal cords and larynx were normal with only mild inflammation in the airways. The secretions they sucked out were of a good normal colour and were easily suctioned, not sticky at all which is great. The laboratory only found rhinovirus, which is just the cause of the common cold, but other than that no bacterial infection. 

Yep! NO BACTERIAL INFECTION!!!!

So why have I still got this horrible cough...?

Well, the bronchoscopy did show large numbers of fat-laden macrophages. Huh??? In non doctor talk that means my reflux is still playing up bad. I have always had bad acid reflux, tipping the scales with very high levels when I had a ph study done at 3 months old. I was always on the highest dose of all the reflux meds but the last 6 months or so I started getting very bad tummy pains so they stopped some of them just it now seems I need them. I am refluxing bad and it is tipping over into my lungs so that's why they think I'm coughing. So I'm re starting on 5mg of domperidone 3x a day which basically makes me digest food a bit quicker so not really giving it time to be refluxed - if that's a word! I just really hope it doesn't give me the bad tummy aches again. I do now take probiotics which helps so keep your fingers crossed for me.

They also done my annual bloods while I was under the general anaesthetic so they won't have to do them at my yearly assessment in June. All the results came back fine which is good as last year they were inconclusive as after 3 attempts to take blood and it clotting mum said enough was enough so they couldn't get enough to do all the tests the wanted to. At least they managed that this time. 

In other news this week I've really progressed well with my swimming. I can now swim nearly the whole width of the pool under water front crawl as well as a whole width on the surface on my back, can float like a starfish and various different things with floats and the woggle. So I'm graduating up to the next class from next week. I'm very excited but a little nervous too. Bye bye red hats hello orange.

Next week we should find out what infants school iv been accepted into ready for September. I really hope I get the same one my friends are going to. 

Please dont forget daddy is doing a whopping 100 mile cycle in August to raise money for the cystic fibrosis trust. I'm not sure what that means but mum said if dad raises enough it will help doctors to look at new medicines which could potentially keep me out of hospital so if you would like to help him reach his target and spur in on this is the link to do so...

www.uk.virginmoneygiving.com/chalkyraw

Or you can find the link on the top right hand side of this blog.

His training is going really well so far, he has got up to 25 miles in one sitting so please help him along his way. If everyone reading this donated £1 that would make a huge difference to me and many others. Thank you to everyone that has sponsored him so far, I'm very great full.

Ethan x

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

Update on iV's

Well the first few days went as good as they can, until the early hours of Wednesday 5th when mummy started being sick. She was very poorly for a few days and I got to go around with the nurses helping them and helping Paul the man who cleans our room and stocks all the hand gels and hand towels. I was very good at helping and everyone kept saying Paul will never be able to cope when I go home :) im sure he will. Anyway everyone looked after me while mummy couldn't get out of bed and they all looked after her too, including me. Friday nights dads night came so mummy went home to get some rest and decent sleep then I went home for a few hours Saturday. It was the BEST!! Auntie sarah and uncle Kevin came to see me and I had lots of cuddles with my levi, iv really missed him. Saturday afternoon mumsie noticed I was scratching my foot. It looked like I had been bitten so she put some cream on it but then noticed I had a few on my belly. When we got back to the hospital for my 6 o'clock ivs we showed the nurse. She said she thinks im getting a virus like mumsie had but getting a little rash with it. She took my temperature and it was 37.9, higher than my usual 36.5. So yep im coming down with something.  Great :( mumsie did ask if it could be medicine related as nanna lott had a reaction to medicine like this before, but no its definitely a virus.

As the night went on the temperature went up and the 'little' rash got not so little. By sunday afternoon my temperature was 39.9 and I was just like a big red blotch. I was so so uncomfortable. Sunday night I was sick. Yuck! I even managed to land some on mumsie, oops sorry. By now my rash had spread like wildfire and my hands and feet were starting to swell up, they really hurt. One of the doctors came in to see me and said the rash was basically my body having an allergic reaction to the virus I have. We just have to ride ut out. I was put on a drip over night to keep my fluids up and had regular checks every 1-2 hours through the night.

Monday

My temperature Is still really high and im in so much pain with this rash. Im so itchy its horrible, they have been giving me piriton to help with the itching and It does help a little. My hands and feet are so swollen today it hurts to do anything, hold a cup or crayon, cant even walk to the bathroom. Iv spent the day in bed in the same position pretty much all day, feeling very miserable. Not eaten anything today but have managed to drink and keep ot down. Go me!

This afternoon my consultant came to see how I'm doing. Putting the virus and rash aside and back to the reason im here. Im still coughing. Shes not happy. We are booked in for a bronchoscopy next monday and will be here untill at least then. No going home thursday now :( iv now got to have some more bloods taken as the blood taken Friday the laboratory left it too long to do the relevant tests on it and it clotted. Again. This has happened once already. They need to check my blood to make sure the levels of the antibiotics isnt too high to cause problems. So we donned some magic cream and took the bloods yet again. Hopefully third time lucky and they will get the results soon.

When my consultant was with me she gave me the once over regarding the rash. Turns out it IS to do with my antibiotics im having. The ceftazadime is apparently notorious for this sort of reaction. So they are changing that one now to a different one. Mumsie wasn't very happy at all, she asked about the meds at the weekend but was assured it was nothing to do with it. Anft who knows, had the laboratory look at my blood the first or even the secont time, maybe just maybe something would have been picked up and could habe prevented all this. I dont know, its just a maybe.

Iv been really up and down tonight. Iv not been having the piriton regularly so the itching has returned with a vengeance. It hurts really bad. So I had some more and had some paracetamol with the hope it would help. It didnt. We put cold wet tissue over the really bad parts which helped stop the burning for a while but it soon moved to another part. In the end mum asked to see the doctor to see of there was anything else they could do for me. So in they came with some ibuprofen and a different antihistamine which had a sedative in too and low and behold within a few minutes I was out like a light.... hopefully till the morning.

Fingers crossed tomorrow is a better day.

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!!!

                                 

First IV admission, 15/02/2013...

It's been a while since my admission and you know what, I can't even remember what I had for lunch today let alone what happened last month. So mummy.... over to you..

E x

We arrived at the hospital at 11am and shown to our room. Or our 4x4 cell should I say. Ethan had to be nil by mouth from 12 as the doctors were going to sedate him at 2pm and try for the long line. Well, I kind of guessed it was going to be bad from the off but after a tiny bit of the sedative, trying to get Ethan to even open his mouth was difficult. When I finally got the syringe in with Ricky holding him down he just spat it straight back at me.We probably managed to get around half what he should have into him. By this time he was so distraught anyway he fell asleep after about 15 minutes.

after the sedative

The nurse came and put the ametop (magic cream) onto his arms at the elbow joint and left us for a few minutes for that to take effect. However, as soon as I picked him up to walk round to the procedures room he started to stir. By the time I laid him on the bed and the doctors started to pull him about he woke right up, he was drowsy but wide awake. And I was petrified for him. When they took the tape off his arms where the cream was it became clear that he is actually allergic to this wonder cream and his skin was bright red and raised, so this probably didn't help. They tried 4 times to get a long line in but, even with 6 of us holding Ethan down, he wasn't quite still enough. 3 of his veins popped and the one they did manage to get in went about 2/3cm before being obstructed. We decided enough was enough for now and we went back to our room to calm him down, have dinner and re asses in a couple of hours. Walking back to our room one of the nurses that was looking after us commented on how well he coped and how willing he was, after everything that he had just been through when the registrar asked to look at his hands and feet to check for veins he just handed them over without a fight. The innocence. And there was my first set of tears for him. He didnt see though. Seeing my baby go through that, crying his eyes out broke my heart to pieces. Trouble was I knew we had to do it all again as he had to get a line in one way or another. So after dinner a different reg came to see us and explained that they wouldn't be able to get a long line so was going for a cannula in the back of his hand. Trouble with these, or so I was told, was they are not long term at all. They can blow after just one set of iv's or at the most would last 3 days. I did have a little melt down over this later. The thought of putting him through this numerous times was killing me. Anyway, he couldn't have the magic cream, and the other brand Emla that I know he's had before they dont stock!! I know!! So they sprayed his hand with a freeze spray and went for it. It took her all of about 5 minutes but seemed like an hour to me. I sat him on my lap cuddling him so his arms were behind me and just held him tight. Done, cannula was in. So we went back to our room where he had his pick from a bag full of pressies, lots of cuddles with mummy and daddy and the first iv line hooked up. For our duration, he had to have Ceftazadime and Tobramycin at 6pm which took an hour and a half, then Ceftazadime at 2am and 10am which to start with took seconds as they pushed it through but the longer the cannula was in the more tender it became and was hurting him so they ended up hooking it up to the machine to do it slowly which then took half an hour. So Rick left at 8:30pm and we settled down in bed, watched a bit of you've been framed, or as Ethan calls it 'new favourite' and he was asleep by 9pm. I on the other hand didn't sleep for the first 3 days! The 2am iv came and went and he didn't even wake up.

Gorgeous smile

Physio came to see us in the morning and I learnt a few different techniques and we played some blowing games which Ethan absolutely loved and had to get everyone else to do it to. 6 o'clock came and was iv time but Ethan just screamed and cried at just unwrapping the bandage. He had only had 3 lots of antibiotics through it and it was already getting sore. This was when we had to start putting the meds on the machine so it went slower and didn't hurt my baby. He was fine with that and played happily until it finished. His oxygen sats had dropped to 94 which is not good, he never goes below 98/99 but got him to shout a bit and they started to go back up. 10o'clock obs were all fine after that.

Ethans cannula lasted an amazing 8 days. Everyone was shocked at how well he had done with it and is going down in the wards history for longest lasting cannula in a toddler. But that eighth day came and the cannula had come out. And it was just me, no Ricky to support us. I was even more petrified than the start and couldn't keep myself together. But he had to do it... so I had to do it. I have to stay strong for my baby, he's the one going through this not me, pull yourself together and be there for your son!!
The ward sister was insisting on sedation and long lines despite me telling her time and time that he wouldn't take the sedative. But she wouldn't listen and the trauma of day 1 came flooding back for both of us. My baby is crying his eyes out saying not the special medicine mummy please while the nurse is trying to get him to take it. I hate the feeling that gave me, all I could think was I was failing Ethan by not protecting him. Enough was enough and I told her to stop and actually listen to me. If they cant give him a general for a long line then we would have to have another cannula in the other hand and hope it lasts. Not the option I wanted but trying a long line again with no sedative at all and no numbing cream, was certainly off the cards.

Why cant this be happening to me? Why cant I do this for him? Why cant I make him better? One of the main roles of being a parent is protecting your child and I can't. There is nothing I can do to take this pain away from him and that rips me to pieces. Daily.

The cannula went in fine and after a few cuddles and pressies he was fine again. He was however a little concerned for his original wiggly worm (the line that comes off the cannula that the antibiotics go in) and had to keep in. In a bag. In my bag. For safe keeping obviously. Today was Friday... the weekend... Ricky was staying here till Sunday which meant I got to go home and sleep in my own bed. I went for dinner at my dads Friday night then home to bed. Funny though as all I could think about was my boys and when I could go back. They coped very well. Too well.

Nurse bear with patient bear-bear

By now Ethan was pretty much 'lord of his manor'. Every morning soon as he woke up he would go running up to the nurses station to say hello and see if breakfast was ready, although it never was on first look. All the nurses there were fantastic with him although he did have his favourites. After breakfast he would head straight to the play room for a bit before his 10am ivs. He knew his way round like the back of his hand. And everyone sure knew him. Even after a week and a half of being cooped up in here he wasn't bored, didn't play up and was still the funny, cheeky boy that walked in here brave as anything the week before. He amazed me on a daily basis even more so than usual.

The day before our 'release' Ethans wonderful 7 day cannula failed with 4 more iv's left. So we had to get a new one in and quick so as not to fall behind with ivs or we wouldn't be going home in the morning as planned and would have to wait till the evening. 5 minutes later it was done. I was pleased as I didn't have time to work myself up and Ethan was brilliant and even watched them do it, cried, but still wanted to watch. So this saw us through to Fridays 10am iv and then we was all done.. finished. He didn't understand why they was taking his wiggly worm out but I did, and I was so so happy for him. They did however manage to get a fabulous deep vein and soon as the cannula came out he bled everywhere. And I mean everywhere. A plaster wasn't controlling that and he got his beloved bandages back, clean ones obviously. Change of clothes and off we go.

We did leave behind a hamper of sweeties for all the staff there that made the whole thing that bit more bareable but the one that really needed praise was our boy. Words can not express how proud he made us. He recovered from everything so well, even though he was waking up having nightmares about the pain from his cannula he still took everything in his stride, getting stronger and stronger as the days went on. Sure, he was fed up of being pulled left right and centre, I was fed up and uspet watching it, but did he ever let that get him down. No. He is a brave, strong little boy that is kicking cf's butt!

I never want my baby to have to go through that again and will do everything in my power to try and keep him out of hospital... keep him away from coughs and colds where I can, away from smoke and harmful environments and make sure he has all his medication, physiotherapy and treatments.

There are no lengths I wont go to to keep my baby healthy, he fights his hardest and so will I.

Love you lots baby boy xxx

Playing 'stupid frogs' with auntie Sarah and auntie Kelly

best buddy Nik came to visit

Tired monkey x

Nebuliser

Last night *happy happy*

HOME... and with his best friend in the world, Levi x

No news is good news....

Me and my best buddy Nik in the summer

I'm always told no news is good news and in this case that's kind of right. It has been nearly a year since I last checked in, naughty I know but I'm a busy toddler these days. So what's been going on... Well I turned 2 and had a rocking party for that, all my nearest and dearest came to celebrate with me.

Me and my Jessie Woo

Then in August I welcomed my little cousin Jessica into the world. We see each other pretty much every week and chat loads although she's a bit too girlie for me however I'm starting to get her into my cars and trucks now. She mainly likes to chew them but its a step in the right direction. October saw daddies 30th birthday and we could finally let the cat out the bag of his surprise that had been eating me up trying to keep secret for a whole year. Mummy took him to Barcelona for the weekend while I pretty much partied non stop with auntie Sarah and uncle Kevin. Halloween last year I decided on a devil outfit, mummy says that's rather fitting. Whatever that means!

 November I went to my first proper fireworks display, it was the best!! There were rides and candy floss not to mention the huge bonfire. The fireworks were amazing and there was lots of ooing and awwing from the crowds of people. Christmas was fab this year. I was so excited Christmas eve I wanted to sit and watch my stocking all night waiting for Santa to fill it up. I didn't last long though and soon woke up to it overflowing with lovely bits. Mummy and daddy let me empty it all over their bed and play with all the little toys. Then it was business as usual, onto physio, nebuliser, meds and breakfast.... or so I thought. For some reason I couldn't open the living room door but after breakfast, all became clear... Santa didn't only fill up my stocking... our empty Christmas tree was hidden under a mass of presents. WOW!!! Did I have fun opening and playing with everything, and for the first time I wasn't more interested in the wrapping. Daddy had a few days off work so made the most of that then it was all back to normal.

HAPPY NEW YEAR X

New year we spent round auntie Kelly and uncle Johns. Jessie couldn't handle her milk and passed out well early, me on the other hand was like a Duracell battery... no stopping me. Midnight struck and everyone sang some weird song and held hands waving them around, I blame the drink, then we went outside for a tradition of setting off a Chinese lantern. Mummy and daddy always make a special wish letting it go and off it floats way up high and into the distance. We didn't get home till gone 1am but I was still awake before them the next day... lazy parents I tell you!

Daily medication, when healthy

So, health wise since last year I've actually done pretty good. No coughs or colds. Until now that is. I came down with a really nasty cough in December so the hospital gave me a months course of antibiotics. It looked good. Cough started to dry up and I felt on top of the world. Then as I was coming to the end of the months antis the cough returned with a wet spluttery vengeance :( so was put on a 2 week course of Cipro to try and shift it. This is a strong antibiotic and should have made a difference within a couple of days, but it didn't. It didn't help at all. Although my cough swabs from clinic have all been coming back clear, we all know I've had little bouts of that rotten Pseudomonas and can not actually be 100% sure of what is actually going on inside my little lungs, therefore the doctor has decided to admit me to hospital next week (15th Feb) for a 2 week course of iv antibiotics. Having never had this before I don't actually know what this means but when the doctor told mummy at clinic, she cried. So cant be great.

Although I feel fine in myself and to you I look perfectly healthy and happy, that's not actually the case for what's happening inside. There is obviously some little nasty bug that's decided to invite itself into my lungs and set up home. Well I have bad news for this squatter... It's being evicted!!!

Unfortunately, this is just one of those things with having cystic fibrosis. Sometimes we get sick and just need a bit of extra help to get better again. That's my life and there is nothing I can do about that, so until we get a cure, that's something we will just have to deal with.

Mummy is staying in hospital with me and daddy will visit everyday. Once I know a bit more about what is happening I will update. we all know my mummy can be a bit of a wimp at times, so ill do my best to get her through it and hold her hand when things get tough :)

E x

One of the pictures from my recent photo shoot x