Hour by Hour

Apologies for the long silence. We have been permanently by Ned’s bedside and I have been too tired to do a proper update, having not slept for the past 36 hours. I know that a lot of people are waiting to find out where we are so I will do a short update now and a more detailed one once I have had some rest.

IMG_2042

Ned as he is right now – tucked up and in a very deep drug induced sleep

The most important thing is that we still have Ned. He made it through the night and successfully negotiated his heart catheter this morning. It has not been without its ups and downs – there have been tears of both anxiety and relief on several occasions but I will fill you in on these later. As I write, he is in a deep, drug induced sleep on his bed in PICU and surrounded by a mass of wires, lights and equipment helping to keep him alive. He remains, by any definition, critically ill and is still on a ventilator. We have been told that he is borderline and could go either way but, crucially, that he has a chance. I am not willing in any way to get ahead of myself as he still faces a huge challenge, but it is an improvement on yesterday when his prospects did not look so promising.

It has all been a bit of a blur but one thing is for sure – as I have said so many times before – Ned is fighting. We have managed to have a few, very short exchanges with him, enough for us to know that he is still in there but he is now in such a deep sleep that it will be some time before we are able to communicate with him again. John and Jenny are now here, whilst Alice and Arthur are with Naomi in Bristol as it would be too much for them right now to see Ned in his current state.

I have been blown away by your messages of support here and on Facebook. I read out many of them to Ned throughout the night and they are a constant source of strength. Please do continue to send them – he is not out of the woods yet and needs all the help he can to get through this.

Thank you, every one of you for your love and support.

53 thoughts on “Hour by Hour

  1. James Warne

    Marie and I send continued love and positive vibes through to you all. So glad to read that Ned continues to fight hard. We’re thinking of you all non-stop.

    Reply
  2. Quentin

    Ned, the Lionheart inside you is telling us you’re a true Lion! Keep strong, sweet dreams but come back to us soon. You’ll have plenty of time to lie in bed all day when you’re a teenager, for now we need you up and our of that bed… ! Ice Cream and pizzas await, so what are you waiting for! Thinking of you miles away in Sungapore which is colder than London right now only because London is having a heat wave!! More ice cream required! Quentin, Liza, Isaac and Luke xx

    Reply
  3. Steff Dave, Bethany Jethro and Tirzah Kingsley

    Fantastic news. You are all still sooooo much in our thoughts and prayers and will continue to be so. Thank you Andy for the update. God bless you xxxxx

    Reply
  4. Lizzie

    It may be night time but we are still praying for you Ned and for your lovely mummy and daddy. We love you all so rest up and get well. Lots of love and hugs xxxx

    Reply
  5. Fleur van Gunsteren

    Lieve, lieve Ned,

    We have never met but my thoughts are with you, we are paying to God, every Hindu god, fingers crossed, and everything else pls keep up fighting little wonder boy. My thoughts are also with your family and also your medical team, keep up the energy and positive vibes and giving them wisdom,

    Kuffel lieve kleine vechter!

    Xxxooo

    Reply
  6. nick haynes

    Keep fighting Ned! I’ve not met you yet but I can’t stop thinking about your struggle, and am sending all the positive thoughts I can. You are a real fighter, and I know you’ll win this one.

    Reply
  7. Julie and Steve

    Thank you so much for the update Andy, like many others we have been desperate to hear what is happening. So pleased to hear that Ned is continuing to fight, hang in their little fellow! We are willing you through this.
    Much love to all as always
    x

    Reply
  8. simon

    Dear Andy,
    It feels as though lots and lots of your friends and family spent yesterday holding their breath – it certainly felt like that for us – so that everyone’s energy and thoughts could be directed at your little fighter.
    Huge relief to see your update, and although you’re right not to get ahead of things it’s brilliant news that he has made it this far.
    We will all continue doing the only thing we can, and send you all our positive thoughts and love.
    Keep fighting!
    With love from all the Tappings x

    Reply
  9. Katie Tampkins

    What an amazing boy. We are praying for you all, thinking of you all and sending all our love xxx

    Reply
  10. Alex Pettifer

    Hi to all of you. Your blogs are an inspiration to all of us. Neds ability to keep fighting is so courageous and tells us all how life is precious. Our love to all of you. Keep going Alex

    Reply
  11. Olivia Folkesson

    Thanks for the update Andy, don’t know how your managing it! Come on Ned keep in there, your little friends and family are all waiting for you to wake up. Sweet dreams, lots of love Olivia and Emily xxxxxx

    Reply
  12. Becks Maloney

    Thinking of you all at this very difficult time. So glad that John and Jenny are with you now, to give both of you a bit of support too – you are amazing parents and an inspiration to us all.
    Keep fighting Edward, you gorgeous little boy, your friends and family all need you back in Cirencester.
    Love to you all, stay strong.
    Becks xxx

    Reply
  13. Pippa Shay

    Dearest Ned,
    I’ve never met you but I’ve heard so much about you from your Daddy. You are such an amazing, brave soldier. I think you’ve been in a very tough battle and now your body needs to rest a little while. And while you sleep you are getting better and stronger every moment until, very soon, you can wake up again.

    You are being sent so much love to make you strong and well and your Mummy and Daddy are right by your side, loving you so much and so proud of you. And all your family think you’re amazing and love you so much. And the doctors and nurses are so proud of you too. One day they will all be telling the story of their best patient ever called Ned.
    And when you’re well again you can play with Arthur and Alice and tell Daddy not to sing. And there will be bags full of Pom Bears waiting to be eaten.

    So sleep a little while now while your body mends itself and I will tell everyone I know about the brave little fighter called Ned xx

    Reply
  14. Val and David

    So pleased to hear Ned is still in there fighting. He is such a remarkable little boy with so much spirit. It is good of you Andy to find the time to keep us updated as you must be very weary. We think about you many times during the day and try to imagine what it must be like for you all. You are doing a marvellous job. Keep strong.

    With our love and prayers,

    Val and David

    Reply
  15. Clare Doody

    Thanks so much for keeping us updated Andy – I am amazed at your capacity to continue doing this blog let alone anything else but as others have said, it’s a life line that we are all so pleased to have that helps us understand what you’re going through and we appreciate anything you’re able to tell us.

    Liitle Ned – I’m really looking forward to seeing that gorgeous cheeky face in Powells playground soon so you rest now and as soon as you can you show you’re Mummy and Daddy what a fantastically strong boy we know you are by getting out of bed and having a walk around. Lots and lots of people are really proud of you and wanting to hear that news so we’ll all give a big cheer when we know you’ve done it!

    Loads if love and hugs The Doodys xxx

    Reply
  16. Virginia, James, Lucy and Maddie

    Dear Edward, really looking forward to seeing you rushing round the playground soon, playing with all the big girls (Alice’s friends! ). Sending lots of hugs, Maddie, Lucy, James and Virginia xxxxxxx

    Dear Andy and Clare (and your parents), sending love, strength and prayers… you are amazing! Xxxx

    Reply
  17. Shepherds

    Thankyou for thinking of us all, and keeping us updated. Your ability to continue doing this amazes me, and we are all so grateful.
    We keep sending all our loves, prayers and positive thoughts to Ned. Your little boy has more fight in him than most adults I know. People you have never met are praying for you all right now. Love to you all, stay strongxxxxx

    Reply
  18. Helen

    Thinking of you all as yet another long night is over and Ned continues to hang in there. Thank God for the skills of the doctors, nurses, and everyone who is caring and rooting for Ned.
    Sending a big virtual hug to you all.
    Love Helen xx

    Reply
  19. Kerry

    Where There Is Love

    Nothing is impossible where there is love.
    There is no mountain that love cannot cross; no dessert
    that love cannot survive; no winter that love
    cannot warm

    Where there are shadows of uncertianty, love
    will overcome with the sunshine of faith.
    Where there are clouds of confusion, love will
    prevail with the rainbow of hope.

    Loving and being love are what life itself is
    all about.No matter the time or the place,
    nothing is impossible where there is love .

    Reply
  20. Emma Clothier

    Wow you are all so amazing and so strong! We continue to pray for you all and you are in our thoughts constantly. Thank you for updating us all we apreciate that it can’t be easy. God Bless all of you xxxx

    Reply
  21. 'Miss Austen'

    Dear Ned,
    The staff and children from Powell’s are all rooting for you. Our love and prayers are with you and your mum and dad, and the lovely Alice and Arthur, and we are so looking forward to seeing you next year xx

    Reply
  22. Julie Shum

    Well done Ned, thank you Andy for the updates we are all with you here in Chesterfield, Aunty Dot and Aunty Vera send there love ,prayers and hugs, I made a promise with my prayers that from now on I will go to Church every week without out fail-and I have- so Ned you now have to keep your end of the bargain no excuses ok? love you all so much keep strong , granpa needs someone to torment, so take all our love and keep fighting the good fight xxxxxxxxxxxxxx

    Reply
  23. The Whistlers

    I’ve no idea how you manage it but thank you so much for the update, Andy. I was actually quite nervous to check for an update this morning so reading this has lifted spirits in Chedworth a lot. Ned, when (if?) Daddy reads this to you, fight on little man! You have no idea how many people around the world are praying for you!

    Reply
  24. Friend of a friend

    I’ve no idea who you are but I wanted to let you know that Ned even has complete strangers rooting for him at the moment. Be strong.

    Reply
  25. Norma

    You were all constantly in my heart and mind yesterday and we read your blog with relief Andy; so thank you so much for that .
    Edward’s big dark brown eyes will soon be looking back at you, I’m sure; and I can’t wait to read that !!!!!
    You may have to wait a little longer to see that gorgeous cheeky smile, which he will probably make you work very hard for !!! Remember Andy …no more singing …. Mr Caruso!!
    Hang on in there; it may well be a long old slog up that hill; but he is a little trooper !!! Try and get some sleep you two ! Love with positive vibes to that gorgeous little chap, you and all your family…XXXX

    Reply
  26. Fran and Malc

    Dear beautiful brave little Ned
    It’s so sad to have such a sweetheart fall so ill. Take care little angel. Take lots of rest and get well soon. Everyone is waiting to see your beautiful smile again. Sending lots of love and kisses Fran and Malc xxxx

    Dearr Andy
    Thank you so much for continuing to write the blog when things are so difficult for you and you are so exhausted. Everyone appreciates it I know.
    We are thinking about you all constantly and willing sweet Ned to come through this toughest battle of his little life.
    Take care of each other. We are so glad that Jenny and John are with you.
    With our love as always to you and Clare, Alice and Arthur, Jenny and John and all the rest of the family.
    Fran and Malc xxxx

    Reply
  27. Garry and Julie Stoner

    Andy your updates are amazing, quite how you are keeping it all together to produce these beats us both! Julie and I are right with Ned, you and Clare and pray that things turn out for the best. The medics and the specialist care seem outstanding, by the way love your sense of humour re the German doctor…. Keep strong mate and prays for Neds recovery, Garry and Julie Stoner.

    Reply
  28. Emma Pete and Rosie

    To Andy and Clare we are thinking and praying all the time for your continued strength through this. Your love and devotion to your little boy will be giving him the will to fight. There is a huge amount of love.positive
    thoughts and prayer being sent to Edward from around the world. We are with you. To beautiful Ned, your Mummy and Daddy are right by your side, keep fighting, you can get better, little soldier. Tree Fu Tom is there fighting with you……. with all our love Emma Pete and Rosiexxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

    Reply
  29. Brad & Linzi

    Keep the faith, Ned, keep up the fight, and we will pray to any power there is to help you through this. Sending a whole bunch of love xxxxx

    Reply
  30. Kate, Robin, Jasper & Ottilie

    Thinking of you all, especially the unbelievably brave and strong little Ned, and sending lots of love and get well soon
    vibes. Xxx

    Reply
  31. Pettifers

    Thinking of you all and hoping Edward’s deep sleep enables the healing process to really kick in. Love and hugs, Sandra & Alex xox

    Reply
  32. Zoe + Paley

    Thank you for the update Andy, we’ve been dashing around an Island trying to get wifi to see how your beautiful boy is doing. Ned, we built you a sancastle on the clearest white sand, hope you’re dreaming sweet dreams of doing the same one day soon. Keep fighting, and know that we are all with you. Much love to all, Z+P xxx

    Reply
  33. The Rybergs

    We have been reading your posts and send you all our love and positive thoughts. Ned is the luckiest boy to be part of such a loving family, and both you and Clare are amazing. Your strength makes him strong. Lots of love to you all.
    Jonas, Gaye, Sofia, Charlotte and Matilda xoxox

    Reply
  34. Vicki

    Dear Clare, Andy & family,

    I’ve just read your whole blog from beginning to end, am sending positive thoughts to Ned, wish I could take some of your burden from you. Love to you all.

    Vicki, Hayden, Jake & Henry xx

    Reply
  35. Ruth & Roger

    Thank you so much for your courage and strength to send these updates which strengthen us as we continue to send our love and prayers for deep healing to take place as Edward sleeps. Xx

    Reply
  36. Steff Dave, Bethany Jethro and Tirzah Kingsley

    Dear Edward.
    I am looking forward to bringing my guitar over and playing some of the FUFs song with you and Arthur. I think we should definately do the dingle dangle scarecrow, the hokey cokey and Jesus love is bubbling over. I can’t do them so well without my backing group, so get well soon. xxx

    Praying for rest and peace for you Clare, Andy, John and Jenny. So precious and so much n our thoughts and prayers. Loads of love and hugs. xxxxx

    Reply
  37. Lizzie

    Just wanted to let you know that the whole church stopped and prayed for Ned today. You guys are very special to us all xxx

    Reply
  38. Seri

    Dear Ned, Clare & Andy,

    All our love from Singapore. We are incredibly touched by your courage, strength and love.

    xxx
    Seri , Greg & Dayan

    Reply
  39. Sally Otter

    Dear Clare, Andy, Ned, Arthur and Alice,

    We can’t imagine how tough this last few weeks have been for you – you must all be exhausted. Huge respect to Ned and his spirited response; you’re so right to be so proud of him. And huge respect to you and Clare for being the parents you are. We’re thinking of you all and sending positive thoughts to keep you company in the small hours.

    Thanks so much for sharing what’s happening.

    Big xxxxx
    Sally, Jon, Olive and Bert

    Reply
  40. Laura Woods

    Just had a chat with Fiona on the phone. So glad to hear Ned is continuing to fight. Small steps but in the right direction. I did laugh when she told me that when she said hello to Ned he said “No max!”

    We’re off in holiday tomorrow but will keep updated on Ned’s progress and will be thinking of you all. Kim and Myself Would love to come and see you all when the time is right. Keep positive

    Love Laura x

    Reply
  41. Lisa, James, Olivia and William

    We continue to be amazed by your strength and clarity during this traumatic time. Constantly thinking of your little man, yourselves and the rest of your family through out the day and night. Take strength from “where ever there is life there is hope. It fills us with fresh courage and makes us strong again”-Ann Frank.
    Xxxx Lisa, James, Olivia and William xxxx

    Reply
  42. Emma Pete and Rosie

    Thinking of you Andy and Clare, very glad Clare’s parents are with you. I hope you can get a little rest.
    To sweet Ned, I hope sleep is giving you strength, and your dreams are full of the people you love, who are there willing you to get better. Keep fighting little one. xxxxxxxxxxxxx

    Reply
  43. Nicky, Julian, Hannah & Christopher

    A little prayer for Ned tonight (adapted from an old prayer book I had as a child) ….

    Lord, keep Ned safe this night,
    Secure from all our fears.
    May angels guard him while he sleeps,
    Till morning light appears.

    Sending you all our love and prayers

    Nicky, Julian, Hannah and Christopher x x x x

    Reply
  44. Hugh & Hanneke

    You are so much in our thoughtd snd prayers. We keep looking at your wonderful blog Andy for updates.
    Our Family here in Holland also praying for you and Ned. May the good Lord give all of you the strength and courage you so much need.

    Reply
  45. Jim Meiser

    Oh my! So many thoughts of what to say how to offer words of encouragement.
    We can send hugs and prayers to Ned and know that he is a fighter!
    We also know that Mom and Dad need the same!!!
    We will have you in our thoughts and prayers at all times.
    Take care and love to you all!
    Jim & Rita Meiser

    Reply

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