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!!!