About Me

My photo
Well I entered the world on 25th June 2010, the day after mummys birthday. That picture up there was one of the first daddy took of me. We were all fine and was home the next day. As I am now at 9weeks, I love being in my swing, on my play gym or in the bath kicking my legs around (ready for daddy to take me footie) I'm quite the dribbler!! I do love cuddles though :) I do have my screaming fits, excersising the lungs, I get passed from mummy to daddy then back to mummy till eventually I fall asleep, bouncing me does wonders. So I'm pretty much the same as every other 9week old on the block, only difference is I have Cystic Fibrosis. I will get mummy to explain it as best she can for you and will try to keep you as up to date with everything as we can. So here is my story.....

Tuesday, 2 April 2013

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




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