Friday 19th November......things are never quite what they seem....

I had quite a bad night last night. Had a bit of a temperature and a little cough. Daddy gave me some nurofen throughout the night and helped me to sleep a little better. When mummy got me in the morning I felt a slightly worse and sounded a little 'horse' as mummy puts it. We had breakfast as usual but I didn't really want my bottle. My teeth were hurting, I had quite a nasty cough and because of that I had a really sore throat. My temperature started to rise so mummy gave the hospital a call. She spoke to the registrar who said to change my antibiotics over for the cough and to go to my doctors just to get checked out. A few minutes later the phone rang, its Jackie, one of my specialists from the hospital. Unfortunately she was the barer of bad news......

When we go to clinic I have to do a cough swab. Basically they tickle my tonsils with a big cotton bud to make me cough and if I have any nasties in my lungs it will show up in here when it's sent to the lab. Mine has come back positive, for pseudomonas. At the moment I know it's bad just not sure how bad, the Internet kinda confuses me a bit so try not to read too much on there. I need to have a different medicine called Ciprofloxacin twice a day for 3 weeks. I also need to go into hospital next week to get something called a nebuliser. I think this is like a gas mask where i breath in medicine. I will need to use this for at least 3months now, maybe more. Not sure if I'm going to like this. So that explains why I have been feeling a little off lately. I guess this means that the cf has really kicked in now :( 4 months of good health is not bad.

It's Sunday now and I'm feeling worse than ever. My voice is all croaky and throat is very sore. My cough seems to be getting worse. But iv only had 2 lots of the new medicine so far. I guess I have to give it time to start working. I wake up several times in the night coughing and m&d give me some water to try and help, it does for a while but not for long. I can tell that mummy and daddy are worrying but I'm a fighter and I'm going to see this nasty bug off in no time, you see.

We have not had a very good month in the white household, but after Mondays excellent clinic report we thought things were about to change. Just didn't expect them to change for the worse.....

Will keep you posted when i can,

Ethan x

Tuesday 16th November.....swimming update.....

So last week was my final lesson in beginners :) and today our first intermediate lesson. We have had to change pools and so change days too. I don't mind though. We still have the lovely Kate as our instructor, she is fab. We learnt a new swimming position today, kind of a front crawl :). Mummy now comes under water with me and watches me swim. Frankie and I are becoming quite the professionals even if I do say so myself. I started off ok but to be honest I'm not feeling too great today so we sit out towards the end and watch frankie.

Daddy was off work today as he had some trouble with his van last night so was great waking up to him and going home to him, gave me my lunch and had lovely cuddles :)

Ethan x

Monday 15th November.......off to clinic....

So today mummy and I went off to the Brompton for our clinic appointment. I now weigh 15lb 8oz and i am 64.37cms tall. We saw the dietician who is very pleased with my weight gain so all this yummy food I'm having must be doing me good. We saw professor Bush today, he is very nice and wears funny coloured beads round his neck. I tried my hardest to grab them and put them in my mouth but mummy kept stopping me. Anyway he checked me over head to toe and believe it or not said I am In eceptionally good health, chest was dry an clear, oxygen saturations 100% for the first time ever tummy felt good and overall very pleased with me....GO ME!! unfortunately for me however as I'm becoming a big strong boy my yucky medicine has to be increased with my weight :( not the best news for me but hey, I'll swallow what I want and spit the rest out when m&d not looking hahaha, naughty I know but believe me, if you had to have it you would spit it out too!!

That's all for today, Ethan x

Fireworks party....

So Friday was my first fireworks night...and how great it was. Grandad and Nana Lot had a 'small' gathering that soon turned into about 37 i think auntie Kelly worked out. There was my aunties, uncles, great aunts and uncles and my other Grandad and Nana Carol and plenty more who i have no idea about, I'm sure gramps must know them, i hope so anyway. After a little while gramps went to the end of the garden to start all the pretties....WOW!! they are loooovely :) i was truly mesmerised. Its a shame they had to end. Mummy took me upstairs to get me ready for bed and we watched a few more out the window before daddy tucked me in to my bed that gramps bought me. I woke up to put my coat on but was soon back to sleep in my cot, ahhh.....

After M&D starting me on some yummy food as well as milk, my trousers seem to be getting a little on the tight side round the belly area. Mummy took me to get weighed.....15lb 3oz, Iv put on over 1lb in 2weeks, that's the biggest gain in such a short time i think. At this rate the nurses wont be saying a high calorie diet is whats needed, they will be putting me on rabbit food!!

Not such a good time at swimming this week. Typical as its the first time i have a spectator....auntie Kelly. I was very uncomfortable and just didn't want to play ball. I done a bit of swimming but spent most of it having cuddles with mummy while auntie turnt into paparazzi. It wasn't until after mummy had got me dressed and Frankies daddy was looking after me that he noticed that my top two teeth are coming through. Hooray, someone noticed....now you know why I'm not in the mood for swimming. To be fair every time mummy tries to look at my gums i poke my tongue out and move my lips so its no wonder she didn't notice. I thought i was being funny but turns out if i had let her see, i would of got something to help with the pain, silly me.

Oh well, nothing else to report on.....

Ethan x

p.s I PROMISE pictures will follow of swimming this time as auntie was there and she never goes anywhere without a camera, especially when I'm around :) x

A trip to the nurse....

Before i start, just to let you know i have added new pictures to the page...pics of me and all sorts!!

Well I'm pleased to say my horrible cold has cleared up lovely but I'm still having the yummy medicine. They like to keep them going for 4 weeks to be sure. Hey I'm not complaining! Today however we had a trip to see the nurse. Every time i see her she hurts me and low and behold, today is no different. well there was one difference.....it was buy 2 get one free. She jabbed me 3 times in my legs....OUCH!!!! I settled down after a minute or so and enjoyed lots of big cuddles with mummy. Tonight however has been a bit different, its made me feel all funny and i dont like it. After a spat of crying and some yummy calpol i doze off to sleep and feel slightly better when i woke up an hour later. Daddy gives me my favourite sweet potato for dinner followed by my meds for dessert, mummy give me a lovely bath then back to daddy for my bottle and I'm now off to bed, slightly later than my usual bedtime but i was a brave boy today so you have to let me off :)

Night all x

Monday 25th October.....4 months old....

I'm 4 months old today and after speaking with the dietitian mummy has decided to give me some other food that's not milk. Its yummy :) I have had baby rice and all sorts of fruits and vegetables. My overall favourite is sweet potato, i love that. We make a bit of a mess but hey that's part of the fun.

"have i got something on my face?"

I forgot to mention, a couple of weeks ago Katie (my cf nurse from brompton) came round to check up on us and help mummy fill out some forms. She had the results of my bronchoscopy. ALL CLEAR. There was no mucus or secretions, my airways were clear and when they sent the washings off to the lab, nothing grew. Great news, for now anyway. She didn't have the results of the ph study (the probe to check for reflux) on her and called the next day. Apparently i am refluxing and quite a lot too, not that i knew it. So that's another 2 different medicines to add to the list. I don't know how mummy keeps up with it all...

Ethan x

Wednesday 20th October.....still full of cold....

Last night i slept a whole lot. Think mummy was a bit worried as i slept from 7pm till 9am. I missed out a bottle completely but i had no energy and all i wanted to do was sleep it off. I have woken up today still really snuffly and coughing but a little more energy and hungry too. Hopefully the antibiotics will kick in soon and ill start to feel a whole lot better.

My swimming is coming on really well now too. We do lots of underwater swims and mummy now lets go of me. It was a bit scary the first time but now I'm becoming a bit of a pro :) i kick my legs, wiggle my bum and wave my arms all underwater, and i do it with my eyes open too. Not even mummy does that!

Also i got weighed on Monday at clinic and I'm exactly 14lb, one whole stone!!

Ciao for now,

Ethan x

Tuesday 19th October.....Iv got a cold...

Today i woke up and my nose was really blocked up and i was having trouble breathing and was coughing alot. Mummy panicked a bit but after she got me up and we was moving around, it cleared and i could breath but was still coughing :( I heard mummy on the phone to the hospital and they are going to change my antibiotics again. I hope its the yummy one. I'm feeling very sorry for myself today and all i want is lots of cuddles. We go to get the meds and it is the same yummy one i had before. Its kinda taken it out of me today so am going to have an early night....

Ethan x

Monday 4th October.....Change of meds

For the last few weeks i have been having a different antibiotic as i have had a bit of the snuffles. So to make sure it didn't get to my chest the docs changed it over to a much nicer one. On a good note the cold cleared up but on the downside I'm now back to the yucky antibiotics. I have learnt a little trick though. When mummy or daddy squirt a little bit in they wait for me to swallow it before putting another bit in. If i hold it in my mouth long enough they get bored of watching me and the second they turn their head i spit it out. Hah!! Its bright pink, sticky and stains my clothes but at least i don't have to swallow it. They have however since cottoned on to this and barely take their eyes off me, and tilt my head right back to try and stop me. I do have to swallow most of it but still manage to spit some out.

Its daddy's birthday on Wednesday and i got him a little present, a spurs shirt that i thought he would look really good in. His first birthday as a daddy :) hope he has a lovely day. HAPPY BIRTHDAY DADDY xx

Ethan x

Monday 27th September.....off to the brompton

Sorry i know its been a while but hey I'm a busy guy :) So today i was woken up by daddy, strange as he is normally at work but hey I'm not complaining. It was earlier than usual and while daddy was giving me my breakfast, mummy was rushing around all over the place grabbing this and packing that. Why is she in such a panic? and why is she packing a bag? Whats daddy done now.... :) Anyway i finish my breakie and mummy is flitting around so much she nearly packs me too. I was too quick to remind her that actually i have my own seat to sit in, ahh now she calms down. Daddy loads up the car with me too, (glad I'm going with them) and off we go. Snooze.....

Back here again, I'm starting to think this is my second home.Were back at the brompton hospital. We get shown up to a ward with a couple other children on there, none my age though :( and that's that. i doze off again, we all know i like a little nap :)

Wow I'm starving now. we have been here hours and iv not had any bot-bot at all. Ill soon change that, SCREAM!!!!!!! Ok its not working they are just bouncing me around, walking up and down and passing me back and forth. Whats going on? I'm not liking this at all! Ok this is getting a bit of a joke now, this lady keeps coming over and strapping something round my arm (blood pressure) and checking my temperature, well hello its going to by high, I'm getting myself all in a tis here.....I'm starving!! A little while later daddy took off my clothes and puts me in what can only be described as a dress...yes a dress!! We go for a little walk downstairs and into a room full of people. Mummy laid me on a bed a looked a little teary :( then this man stuck a mask over my face, i smell a funny smell and......

I wake up in mummies arms my throat is a little sore, i can feel something attached to my face and my hands have been bandaged up, they look like boxing gloves. As i start to come round i can see daddy getting my Creon ready for my bottle, at last. I finish my bot-bot and drift off to sleep.

So this is what apparently happened....

...the funny smell was a gas that put me into a deep sleep. While i was asleep the doctor put a camera down my throat into my lungs to check my airways etc and to see if any nasty bugs were hibernating in there. Quite common in cf apparently, we tend to grow lots of different bacteria which can be rather harmful to us if not treated. After they done this they put a probe in that sat at the top of my stomach. This is connected to a little device that will record if i am refluxing at all. This has to stay in for around 20 hours. This is what i can feel taped to my face. Mummy now has to record the time she starts and finishes feeding me and what time I'm laid down and picked up until they take this thing out.

Daddy had to leave us at night as there is only enough room for one parent to stay with me. He went to stay in a room in a different part of the hospital. I gave mummy a bit of a run for her money tonight, I'm not in my own surroundings, it smells funny and is so noisy. I eventually give in and fall asleep for a few hours.

 I wake up in the morning feeling a little groggy but ok and I'm pleased to say its still back to normal with my milk, no more starving me. Now we are just doing a lot of hanging around waiting for the all clear to remove the probe then its home time. I really wish they would un wrap my hands, I'm getting rather agitated not being able to chew on my fingers. After a bit of wriggling i manage to free a finger :) hahaha you thought you could keep them wrapped up....never!! The nurse gives in and takes of the bandage on one hand, yippee!
Finally the nurse comes over and takes the probe out and takes all the different bandages off me. Daddy gets me dressed and its home wood bound :)

Ethan x

P.S Forgot to say i now weigh 12lb 14oz

see....a dress!!



when i started coming round

with my boxing gloves

finally sleeping

hahaha i have a free hand

on daddy playing with the wire just before we went down

heading for home, with a slightly red cheek