Friday 31st May - Star Patient Award

I was looked after last night by Jen, and I was a good girl and had all my medicine again, and slept really well. In the morning, my nurse was Tracey and she took all my plasters off and took my stitches out from where my chest drains were, I was very brave and didn't cry one little bit. My nurse has also turned off and disconnected me from my sats monitor, I am down to spot checks only now. I have eaten lots of food today and passed all my physio tests, I even went for a walk to the toilets and then to the play area and all the doctors and nurses were cheering me on!! In the afternoon my nurse Tracey went to the shop and she bought us both an ice cream, thank you so much Tracey!!! I had the ice cream whilst watching Rio on DVD. The doctors and nurses have given me a certificate today for being so good, I have been given the "Star Patient Award" today and have been given some mosaic stickers as a present. My imaginary brother Jake has had his operation today but he is on intensive care tonight, I am glad that I am off intensive care and I am glad I am away from there and not crowded by babies and now in a big ward and not surrounded by babies crying. Jake has been banging DVDs against the middle of tummy, he is very naughty (all Hannah's words written from our tent on the top of K2) I have been such a good girl that I have been moved to the low dependency side of the top of K2, and I am having a sleep over with my daddy because he is allowed to stay in a camp bed right next to me, we have got curtains all around us, just like a tent and we are still awake and it is past 10 o clock at night, and there are babies crying!

Thursday 30th May - Day 15

I was looked after at night by Sarah again last night, I was a bit of a Cheeky Monkey and I woke up at four o clock in the morning, Sarah made my some toast and put Cinderella on the DVD for me. In the morning I was looked after by Kerry again, I was also visited by the sedation team again, after a brief meeting we all agreed to a slightly faster sedation weaning programme. I have eaten lots of food today and have even managed to get out of bed and take a few steps, I can't go very far though because I am still attached to the machines. I have also done some painting in bed! As I have been a good girl and eaten lots of food, my nurse started to say I could have my feeding tube taken out of my nose, I got a bit upset so my daddy did his best to try and comfort me but I told him to "shut up or I will put a tube down your nose", he remained very quiet! In the end I decided to let my nurse take it out and I have now swallowed all my medicine all by myself! My cardiac consultant came to see me as well, he is a very busy doctor but he wanted to come and see how I was doing, he was very happy to see me so I told him all about my naughty brother Jake (he is not real), and that he was being naughty and was refusing to have his operation. I am still drinking lots of Duck Juice and quacking very loudly when the babies on the ward start to cry.

Wednesday 29th May - Duck Juice and Dancing

I had a very quiet night on K2, it is much darker at night than ICU so I slept much better and I was looked after by Sarah (my friend Imogen's mummy's friend). In the morning I was visited by lots of people, the sedation team, some nice visitors to K2 and some dancing ladies who came to entertain me, I played some drums and a xylophone which was great. I also drew a little picture and practised writing my name for them. Then I had a wash and my nurse Shelley weighed me on a special chair, I had High School Musical on my DVD so I decided to do a little bit of dancing. I also did a little bit of physio on my legs, what a busy morning. Then in the afternoon, my Granny and Grumpy came to visit and brought me a very special visitor, my little brother Ben, "that boy". I was very worried because I thought "that boy" would need to calm down a bit but I think he was very excited so he was very well behaved, me, my mummy or my daddy hadn't seen Ben for nearly 2 weeks and it was so nice to see him, I even let him sit in my bed and watch Despicable Me on DVD, and I shared some chocolate buttons with him (I had saved them especially for him). At night my uncle Andrew and my grandma came to visit and I ate a full piece of toast (well 3/4 anyway). I have also been drinking lots of water which I have now called Duck Juice because it is making me go quackers and laugh a lot!!!! My mummy read me all the letters from the year ones at my school which really cheered me up, and I am starting to get back to being myself. I have been playing schools with my toys and some of them have been very naughty, my nurse doll called Miss Dolly has even pulled out her feeding tube (the one that she had stuck to her face in ICU), she is in very big trouble!!!

Tuesday 28th May - The Top of K2!!!!

I was looked after last night by Helen (the same one). I was a bit of a monkey though because I pulled off my nasal specs and ripped off the big plaster over the scar on my chest! In the morning the doctors came to see me and said that I was going on the long trip to the top of K2, but there was time for my nurse Jenny to let me watch Alvin and the Chipmunks again, and this morning I was able to laugh a little bit! Then at lunchtime we set off for the top of K2, for those that are wondering what I am talking about, well the main cardiac ward at Alder Hey is called K2, and to get there from intensive care is like climbing a huge mountain (K2 is also the name of the 2nd highest mountain in the world), there are lots of ups and downs and you are starved of oxygen along the way (part of the weaning). When I got to the top of K2, my Granny and Grumpy came to visit, and whilst they were 'looking after me' I promptly ripped my feeding tube out of my nose, very cheeky!! But I had to have a new one fitted which I did not like at all!! I have got a nice bed with a big tele and DVD so I have been watching films all afternoon, and I had a little nap as well. My daddy has read some of the blog comments to me, I have read all my cards today and had some lovely presents sent to me so I would like to say thank you!! I also had a special box delivered from Derbyshire Police, it had a lovely furry doggy called Nayla, this is from my Grumpy's work friends so thank you so much xxx

Monday 27th May - Alvin and the Chipmunks

I was looked after all night by Helen again and I was awake quite a bit, I wasn't too impressed with the oxygen mask and my sats were down a bit, so I ended up with nasal specs on again. Today I have been sat up in bed, only for a few minutes at a time, I have a really bad cough and I can't talk yet, however I am managing to get my demands understood by pointing and croaking. I have had a bit of ice lolly and a little bit of jelly, and watched Alvin and the Chipmunks on DVD. My new baby friend Thomas who is opposite me bought me a Minnie Mouse and I was thrilled when I saw it and gave her a big hug! I am still very very weak but have managed a little cuddle with my mummy which was sooooo nice. I would also like to say a huge thank you to my daddy's cousin Alison for completing the Manchester 10km and arising lots of money for Alder Hey, and also a huge well done to my friend Little Ted's daddy and his uncle Kris as well who also did the run to raise money for Ronald Macdonald House (where my mummy and addy are living whilst I am in hospital). Thank you again for all the messages of support, they are really appreciated xxx

Sunday 26th May - a nice little smile

I have had a nice quiet night with Helen, she has knocked down some of my sedation drugs in line with the 'plan'. I was awake to see my mummy and daddy this morning and I can now see them, I even managed to wave at one of the nurses as well (Sam). My nurse Vicky (the same one as yesterday and the day before) gave me a wash and even got a DVD player for me and we watched High School Musical 3, I even had a little drink of blackcurrant juice. I am still on intensive care due to the medicine, I am having to wean off the sedation but I am now breathing all by myself, even my nasal specs have gone. I have had my pacing wires removed so my chest is completely free of any wires or tubes! I still can't talk and I have a very deep cough, but I am communicating by pointing, nodding and shaking my head. I even managed a little smile for my mummy and daddy when they came back from having their tea, I think I made them smile too!!!

Saturday 25th May - Wedding Day

I have had a good night with my nurse Helen and slept well, there was a bit of drama though because I decided to pull out the "arterial line" from my wrist, this is the tube that measures my blood pressure, there was a bit of blood spilt but never mind because the doctors have said they an now measure my blood pressure with a normal monitor on my arm (the blow up type). Today is my friend Connie's mummy and daddy's (Jamie and Claire) wedding day so massive congratulations to them, I can't wait to see the pictures of Connie in her bridesmaid dress. My daddy says we will do a separate celebration for them when we get home, but I would like to send a big hug and lots of kisses to Connie and her mummy and daddy!!! I am still suffering serious withdrawal from my sedation drugs, but my nurse Vicky (the same one as yesterday) has looked after me today and I have managed to cheer my mummy and daddy up this afternoon as I have successfully come off my ventilator and am now breathing all by myself!!!!!

Friday 24th May - Cold Turkey

I have been very restless overnight, my friendly hairdresser nurse Anna has been looking after me but she has struggled to do my hair again as I have been moving around too much, but she did give my teeth a good clean which was nice. Anna and the doctors did an assessment on me and decided that the horse tranquilliser was spacing me out too much and I was showing all the signs of withdrawal from my previous sedation drug. So they have removed the horse tranquilliser and re-started me on the other sedation drug. I have been visited by the pharmacist who has written a withdrawal plan for me, cold turkey it is then, and not the stuff I have on my sandwiches! I have had another chest x-ray and apparently my lungs look hazy and there is fluid on them, so the doctors have decided that I am not yet ready to come off the ventilator and have set me a target to reduce the amount of fluid in my body, I can't keep up, one day they pump me full of liquid to get my blood pressure up, then the next they say I have got too much fluid and have to reduce it!! Hmmm I have had a much more settled day with my nurse Vicky (a different Vicky) though, I have cuddled Lambie lots and and slept most of the day, I am still a bit spaced out and keep waking up and seeing "Rabbits in my headlights." My mummy and daddy are sat with me in intensive care all day from very early to very late at night, but I did get a nice visit from my Granny and Grumpy this afternoon.

Thursday 23rd May - Day 8

I have been looked after overnight by Anna the hairdresser, as I was having a very calm night, she decided to give me a good wash and plaited my hair again, this time with pig tails, and what a nice job she has done! I have kept Anna really busy but not in a medical way, I have been having special milk called Nutrini now for a few days and I thought it was time to get my bodily functions working again, as I am a very polite young lady I won't say anymore!! Vicky has been my nurse today, she has been slowly reducing my Adrenalin, I have been waking up lots and doing lots and lots of wriggling, she has put the radio on for me so I can listen to some music, it make a nice change from the bings and the bongs! I am slightly spaced out though as they are still feeding me with horse tranquilliser, but am much happier with the ventilator today. Then one of the other notorious intensive care consultants came to see me, he also has previous with me! My mummy and daddy were trembling slightly and there was a good crowd in attendance, so he decided to turn my Adrenalin completely off, in his words "lets see what happens". I am considering my response to this outrage!!!! I have also had my dialysis tube taken out of my tummy this afternoon which is another good step and makes me feel more comfortable, I am very happy that my kidneys have started working again, I have decided that they can have a gold star today! We have agreed a peace treaty, to compensate for the Adrenaline outrage, the nurses have said I can have a cuddly toy to snuggle up with so I have now got Lambie cuddling upto me. Lambie is actually my little brother Ben's but somehow I have managed to adopt him! Lambie was given to Ben by Father Christmas on the East Lancashire Railway last Christmas (not this Christmas, the one before) and he is VERY cuddly!

Wednesday 22nd May - Day 7

After a good wobble yesterday evening, I settled down about midnight and had a lovely long sleep, my sats are much better but my nurse Anna (a different one) has pushed her luck a little and started to wean me off the ventilator, but only very very gently. I have been looked after again this morning by Sarah and she gave me a nice wash, changed by bedding, helped to give me some physio which I was much more accepting of today, then promptly switched my Nitric Oxide off! The cheek! Then my mummy and daddy got very worried, one of the intensive care consultants came to see me to give me a good check over, he seemed very happy, the reason my mummy and daddy were worried is that the consultant and me have got previous!!! True to form, after reading all my notes he promptly turned my ventilator right down and stopped my heart drug, his reputation of turning ventilators and machines down in ICU is legendary and strikes fear in to my mummy and daddy, his reputation is nearly as legendary as my reputation! I have behaved very well though!! It has been a very quiet afternoon with my nurse Gina. I would like to say thank you again for all the texts, emails and messages that have been sent to my personal assistants (mummy and daddy)! I am getting them all and appreciate every single one!!

I will do this in my own time!

I have had a bit of a diva evening, I have been dancing around in circles with the doctors and nurses and generally misbehaving! The issue of the vacuum cleaner has emerged again and I have ensured they know exactly what I think about it as well! The verbal stand off has been lifted so I am allowed to have my mummy and daddy talk to me, the doctors were quite keen on me having a bit of awake time, I was as well until the vacuum cleaner came out and was promptly shoved down my nose. Well I was not impressed and have been going through a cycle of dropping my sats (quite spectacularly sometimes), having a little rest, then coughing, having a vacuum put down my nose and then dropping my sats again! This has gone on for about 4 hours and I think we were all getting a bit tired of it, so after having yet another chest x-ray we agreed a different plan of action, stop the vacuuming and send me off to sleep with a dose of Horse Tranquilliser! It is now all quiet and I am having a nice rest, and I would just like to say to my mummy "I Love You".

A Nice Friendly Face

I have been looked after all night by Andrea and I have had a really nice settled night, my oxygen levels are much better. I am being a very good girl, I have been listening to my nurses and doing exactly what they ask me to do. I woke up a little bit in the evening, my nurse told me that my mummy and daddy had gone for their tea but my Grandma and Grandad were sat with me, the verbal stand off is still in place so they were banned from talking to me, but I did give them a little smile. I am still heavily sedated, still ventilated and am asleep most of the time. Then in the morning, my mummy and daddy's friends Nick and Helen's sister in law arrived at my bedside to look after me (She is a ICU Sister at Alder Hey), i thought that was really ace until she promptly nicked my chest drains!! I am now much more comfortable though now those horrible drains have been pulled out of my chest and the holes sewn back up, so I didn't pick a fight. My mummy is also very relieved because she was dreading my drains being taken out if I was awake on the top of K2. This afternoon I have been looked after by Gina, my Granny and Grumpy have been to visit me, and I now have a firm grip of my mummy's hand and am refusing to let go!

Monday 20th May - A Much Better Day

My granny came to sit with me last night, she took over from my daddy at one o clock in the morning so he could go and have some rest, my mummy and daddy come and see me at seven o clock in the morning every day and stay until very late at night and the nurses throw them out! Because i had been so poorly during the day, my granny was very determined to come and sit with me, she left my Grumpy in charge of Ben (I am not sure who would be looking after who though) and to quote my Granny "I am very strong! Sometimes u have to do what u think is right and this is it for me", I think this is some sort of text talk that meant she was missing me! After a very calm night (my Granny stayed until five o clock in the morning) I have had a nice, quiet girly day. Lots of reminiscing again about old times with the ICU staff, I have seen nurse Pauline who looked after me on my first dramatic entry to intensive care more than 5 years ago and one of the perfusionists Paul who looked after me when I was on ECMO after my first operation. My name still strikes fear into them!! My nurse today has been Anna and she has given me a really nice day, she gave me a nice wash, did my hair up all nice, put some matching pink sheets and blankets on my bed and got me feeling all comfortable. I have had a few enthusiastic hugs to help keep my lungs clear, and my oxygen levels are much better today. I made an agreement with the doctors today that they wouldn't try to do anything silly, no weaning and in return I would give them a much better day, a good deal all round. I am still fully ventilated but occasionally I grace my mummy and daddy with my presence and open my eyes and wriggle my arms a little bit. I am still being paralysed temporarily though when the enthusiastic hugs take place, apparently to relax my muscles! There is a mutual agreement not to talk to me today so I can rest, no stories or anything, I have been getting quite excited whenever I have been read to. I am supposed to read every day but my mummy says that my school teacher will understand and won't be cross with me, but I do love my stories!!! The Kidney consultant has been to see me today and after a chat we have jointly decided that my kidneys look as though they have woken up so we have agreed to stop the dialysis on a trial basis and see how I get on, I am quite happy because it isn't the most dignified of procedures. My little brother Ben has sent me a get well card and it has a cute photo of him with his watering can, we are all really missing "That Boy". My daddy's cousin Alison is doing the Manchester 10km run on Sunday, I was hoping to go with my little brother on a choo choo train to Manchester so I could cheer her on, but it looks more like I may have to cheer from afar! As i run this blog as a not for profit organisation it would be great if anyone has a spare £8009 pounds or even a bit of pocket money if you fancy sponsoring Alison, all the money she and her friend Bex raise is for Alder Hey hospital and will go directly towards helping little children like me who need a bit of medical attention! The link to her fundraising website is www.virginmoneygiving.com/team/AlandBex I would really like to send a massive pink set of thank you messages to everyone for all the texts, messages and blog comments, my daddy says he will read them to me when the verbal ceasefire has been lifted!

I am Hannah Storer

To quote the intensive care consultant who knows me very well and has been heavily involved with me every time I have been to Alder Hey, "Looking at things in the longer term, there are highs and there are lows, and this is a bit of a low moment" The day started really nicely for my mummy and daddy, a smile from a surgeon in the parents room after closing my chest, was to use the quote above "one of the highs" However, my reputation of being a bit difficult is back at its strongest today in the Paediatric Intensive Care Unit at Alder Hey Children's Hospital! Today i have demonstrated full on diva behaviour!!!!! I have demanded more Adrenaline, more Nitric Oxide, more Oxygen AND I am now on domestic Viagra as well! All maxed out! I have got my old reputation back and am ruling the intensive care unit with fear! They dared to mess about with me this morning, I was behaving impeccably but oh yes they had to go and pick a fight, well they picked on the wrong 5 3/4 year old girl today! And what a torrid response I have given them. The doctors had warned of a possible Stormy post operative period, so I decided to do a "Hannah" and gave them a Hurricane! That will teach them, I am Hannah Storer and I will not be messed with! My sats (oxygen levels in the blood) have been all over the place since they dared to do some physio on me at lunchtime. Apparently they think it is ok to give me a bit of a massage which it is, but how dare they take the tube off my ventilator and stick a vacuum cleaner down my nose tube? How dare they? Well, I decided to make them pay for that and promptly dropped my saturation levels to 50% for just long enough to make sure everyone took notice. All by myself I then decided to return to a much better level of saturation, not great but just enough to calm everyone down. I then had a bit of awake time, I opened my eyes and my daddy asked me if i would like him to read me some of the blog, I nodded my head and mouthed "I love you", my daddy being my daddy didn't notice but my nurse told him! I have been responsive and listened for a few minutes before drifting back off to sleep, to use the earlier quote"this was one of the highs". THEN they decided to stick the vacuum down my nose again which woke me up, and I was furious, my poor nurse had the full force of a Hannah Storer ICU moment! I dropped my sats spectacularly and no matter what they did I refused to play ball! After toying with them for a good hour, having a chest x-ray and making sure I had a full audience, I decided to behave again, but my consultant had to give me full on physiotherapy session first. My left lung was not working too well but with a nice, if not a bit enthusiastic hug from my consultant my sats have gone back to a good level. I am actually very easy to look after, do nice things like hug me and read to me and I am fine, but be careful who you pick a fight with, I may only be 5 3/4, I may only be small, and I may look a bit vulnerable at the moment, but I am one tough little cookie!! My daddy is not looking very happy, he was looking very smug earlier and had it all planned out, he had avoided the football scores, had got my grandma to make a meat and potato pie, and was going to slope off at half past ten to watch Match of the Day, and probably fall asleep. But I am a girlie girl and i am also the boss so he can have his food microwaved when i tell him and then get himself back to ICU to sit with me so my mummy can go to Mac House and get some well deserved rest, just like me. He can read about the football in the newspaper tomorrow if he must!! I have had an echo of my heart this evening just to check out the reasons why my sats have been dropping, it is all working fine, they just need to not shove a vacuum down my nose without my consent and everything will be fine! Basically they have prescribed enthusiastic hugs every few hours from my doctors, and tonight's doctor is wearing a Minnie Mouse top so that will be extra nice!!! I would like to say a massive thank you to the nurses and the doctors for all your help today, and also the extra effort you put into explaining things and looking after my mummy and daddy, it has been a good tussle today, but I think I have had the upper hand!!!! We will be doing this recovery thing on my terms and my terms only.

Sunday 19th May - Day 4

I have had a very quiet night with my nurse Siji, and this morning the surgeons came to see me and have decided to close my chest, which means my little "My Chest is Open" sticker will be taken away. Just to give my mummy and daddy a bit more stress I have been dropping my saturation levels a bit this morning before the operation, it's just what I do! My nurse Antonia has set my bed space up as a mini operating theatre, there are lots of nurses all dressed up with hats and masks and all the visitors and parents have been asked to leave intensive care for a couple of hours. The surgeons have checked me out inside and say everything is looking ok, and they have put my chest bones and ribs back together with special wires and sewn my chest back together. They say I have tolerated it well. So after 4 days my operation is now complete! I have had a new larger diameter pulmonary conduit fitted to the right side of my heart, I have had my pulmonary arteries enlarged from my left lung to my right lung using a special patch which has been stitched into my own arteries and then connected to the conduit. I have had my VSD (hole in my heart) closed with a patch, which they have had to put a little hole back into because my pulmonary pressures were too high and they have made a new hole (an ASD) to help with balancing the pressures between the left and right side of my heart. I had to go back onto the bypass machine on Thursday evening because my arteries were bleeding lots and the pressures were too high, so the surgeons fitted a wrap to my left artery where it meets my lungs to help and put me a new hole in my heart to balance the pressures, in their words "It was technically challenging". There was even a surgeon who came from London to help for the day! I saw one of the nurses (yes Claire) last night and she was telling me that I had made her work very hard on Thursday night and she was very tired on Friday, but that's what I do!! My nurse has also put my ventilator down my nose (it was in my mouth before) and changed all my bedding, I now have a "Dora the Explorer" pink bed sheet to lie on, nice. I have now got to be a good girl before the doctors start to make me do some work for myself as they will be starting to reduce my dependency on the machines, but only very gently!!

A Nice, Quiet Day

I have had a very quiet and relaxing day, no fighting with doctors and nobody messing about with me. They have taken my adrenaline kick off me though and reduced the Nitric Oxide quite a lot, but because I had a nice wash I have decided to behave impeccably. One of the surgeons came to see me and told my mummy and daddy that I was progressing well and that he will close my chest tomorrow if I have a good nights sleep. We have done a bit of reminiscing with the nurses today, talking about old times when I was a baby and how hard I made them work, nice. My granny and grumpy have been to visit me today and brought my mummy and daddy some nice sandwiches and chilli for their tea, I have also had a few ounces of special milk, hmmm nice and I have cleaned my teeth before bedtime! I have also had some lovely messages which my mummy and daddy have told me about, no wifi in intensive care though so I can't yet read them myself.

Saturday 18th May

I would like to start the day by correcting some of my daddy's writing from yesterday. Firstly, it was not Thursday the 17th May, actually it was Friday, I think he has lost his senses. Secondly, I am not on liquid Nitrogen, it is actually called Nitric Oxide, chemistry was never his best subject!! I have had a girlie night with my nurse Sarah, my mummy and daddy went to have a sleep at Ronald McDonald House just over the road from me, so me and Sarah decided to do our hair up. Sarah has given my hair a wash, put in French plaits and put me a pretty hair band on. My hair was a bit if a state, it was full of blood and all stuck together, I really enjoyed the hair wash because for the first time I didn't send my blood pressure through the roof when someone was doing something to me, I am a really girly girl, and no daddy I still don't like football! I have been a really good girl all night and have had a very calm and quiet night. The plan for today is to keep me completely sedated, have a very quiet day and if I am a very very good girl they might close my chest tomorrow!! This morning I have had a wash, my teeth cleaned and my nurse Helen has changed my bedding, so I am all clean and am looking a lot prettier today. Thank you so much to everyone for the messages of support, they have been great and it is so nice to hear what everyone is upto!!

Adrenaline, Dialysis and Liquid Viagra

I have been looked after all day by Kirsty, she has kept a very close eye on me all day especially my blood pressure. She has been measuring everything that goes in and everything that comes out, apparently it is really important to maintain my fluid levels and apparently they say I am having a "Stormy Time". I have 2 chest drains, a tummy catheter, a normal catheter and am on a ventilator which is doing most of the breathing for me. My chest is still open but they have sewn my skin back together, I am not entirely happy as it may mean another scar. The plan is to keep me nice and sedated for a couple of days then close my chest, hence the need for making sure my fluid levels are ok and I am not too swollen or my chest will not fit back together. I have got 10 machines feeding different medicines to me to keep me calm, I have adrenaline when my blood pressure gets a bit low, then they have to give me more sedation when the adrenaline kicks in and I get excited and my blood pressure goes too high, apparently it is a fine balancing act. Whenever I show any signs of waking up, they knock me out again! My kidneys have gone to sleep so I am now having dialysis to make sure my body is getting rid of the stuff it doesn't need, it is through a catheter into my tummy which the doctors put there just in case, my reputation of being a diva is well and truly still in tact. The doctors say my kidneys should sort themselves out when I wake up though. As my arteries are very small in my lungs, I am back on liquid nitrogen (more commonly known as Viagra), this is to help my arteries relax and allow more blood flow through my lungs, there is rumour of me taking some home again like I did when I was a baby. I have been a good girl all day and the doctors are happy with my progress, so far so good. Thank you for all the messages of support we have had! I have been visited by lots of intensive care nurses who looked after me during my previous stays in ICU, they all remember me well!!

Thursday 17th May

I was a good girl all night and behaved really well, all the doctors and nurses have been to see me this morning to check I am ok. I am still very poorly and have been told to behave and sleep, they have said this could be a long haul!! This bit is from my mummy and daddy: We would be really grateful for any messages or stories of what Hannah's friends and family have been doing so we can read them to her, they will really help. Please add them to the comments on the blog if you wouldn't mind, we may be in ICU for a while so don't hold back, the more the merrier. Thanks to everyone for the Facebook messages as well, they are really appreciated!!

My Operation

I had to get up at half past five so I could have a drink of water and then get to Alder Hey for seven o clock. My mummy gave me a shower using the special soap from the hospital and off we went, I was really good because I wasn't sick in the car, I am normally sick when I haven't had any breakfast.

 We went into K2and I got dressed into my hospital gown, my daddy carried me up to the operating theatre and my mummy took me into the anaesthetist's room and helped me go to sleep.

 It was a very very long day, the operation lasted 12 hours, then it took another 2 hours to get me settled in intensive care. I eventually got to see my mummy and daddy at eleven o clock at night, we were all very tired!!

My mummy and daddy had a meeting with the surgeon who told them I had been "hard work".

 The surgeon told them it took 5 hours to stop me bleeding and I had to go back onto the heart bypass machine as they weren't happy with my pulmonary pressures or something. I really know how to get my monies worth!!!

I was a bit up and down at first in icu but I settled down into a calm sleep at three o clock in the morning. The nurses looking after me were Susan and, yep you guessed it Claire! A different Claire from last time though but there are hundreds of intensive care nurses in Liverpool called Claire!

Round 3

Hello, my name is Hannah Jade Storer and I am now 5 years and 9 months old.  Tomorrow I will have Open Heart Surgery for the third time!  The surgeons are going to do an operation that will stop me being breathless so I can run around with all my friends, they are giving me a new conduit into my pulmonary valve, enlarging my main arteries between my heart and my lungs (they are very small according to the doctors), and hopefully closing or partially closing the hole in my heart!

I will be responsible for updating this blog every day so that all my friends and family ( I have lots of both) can see how I am doing, as I am not yet allowed to have a mobile phone I have recruited my daddy who will be my secretary!! Initially whilst I am sedated, my daddy will be allowed to do the updates but when I am awake I will be doing the dictation!!! It will be good for my literacy skills!!

I have been to Alder Hey today to have my blood taken and I was very brave and didn't cry! The nurses on top of K2 were very happy to see me and gave my mummy a big hug, I don't really remember the top of K2 as I was only 1 when I was there for my last operation, but the nurses all seemed to know me! Very strange indeed!

I have been allowed to go home tonight for a sleepover but we have to be back at the hospital at 7am in the morning, as I didn't cry I persuaded my mummy and daddy to take me to toys r us on the way home (that is and always has been the deal), and I got a sylvanian family corgi family!!!

I have had a bath with special soap which the hospital gave me and I am now all clean, I have had my milk and cookies and am now ready for bed! My baby brother Ben (that boy!) and my doggy Chester have gone to my Granny and Grumpys to stay over so the house is all quiet, my daddy is watching football, for a change!

I am very excited about my operation and am looking forward to all the attention!!! I would also like to say a big thank you to my Uncle Andrew and Emma for raising £2500 for Alder Hey by climbing Mount Kinabalu in Borneo (it is near Australia)! I will do my best to help the nurses spend it!! Also my cousin Alison is doing the Manchester 10k next week for Alder Hey which is brilliant!!!