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