It’s all about blood pressure. And sleep.

Ned has had a pretty tiring day of tests and scans and is absolutely wiped out. I think he has now had 5 anaesthetics of some kind in the past 3 days and is drifting in and out of sleep constantly as a result. Following the doctors’ rounds this morning, we were told that he needed to have three things done – a new ventilation tube as the old one was leaking, a new vascular catheter (vas cath) for a better connection to the dialysis machine and an internal echo of his heart to check for any infections.

The three procedures took place over 5 hours between 11.00am and 4pm during which he was knocked out with more doses of ketamine. I just cannot get used to these and am always anxious throughout. Part of this I know is down to my lack of sleep, but I just can’t sleep anything more than a few hours at a time at the moment. It’s a vicious circle that is completely counter-productive. I trust his doctors and nurses completely, but I cannot bring myself to leave his side overnight. I’ve promised Clare that I will try to break this cycle tomorrow morning, as it’s not doing anyone any good to have an over-protective dad constantly on the warpath.


Ned being prepared for his three procedures this morning

The new ventilation tube and vas cath went without a hitch, although Clare was amused by my attempts to ask the doctor doing it if he had done all the necessary checks beforehand. I suspect that I am becoming a bit of a pain and I think they were all quite relieved when I retired to one of the parents rooms during the echo to try to get some ‘rest’. The echo revealed, thank heavens, that there is no infection in Ned’s heart but did show a couple of blood clots. We have been assured that these are not a problem and will be alleviated by one of the blood thinning drugs he’s on (heperin?) but again my tiredness caused me to over-react.

I am now, at 2.30am, by his bedside and there is quite a lot of activity around him. His blood pressure has been extremely variable today and right now is 52/30, which is getting close to the levels of that awful Sunday evening. It is disconcerting for sure, but we have also discovered over the past few days that he is able to tolerate extremely low pressure better than most people. The fact that he is able to communicate with us when it is this low shows that he is cerebrating, that is his brain is getting enough oxygen. Despite knowing this, it is a challenge to keep calm – the memories of Sunday night are very raw – but his superb team are always in control.

Ned’s new breathing tube unfortunately means that it is now going to be much harder to communicate with him. The last one was too loose, which meant that there was enough air in his throat for us to hear what he is trying to say. The new one is very snug and more efficient as a result, but it means that we can now hardly hear him which is a little sad. It is of course better for him which is much more important in the long term.

On the brighter side, we had two visits from friends in Cirencester today – Simon and Duncan. It was great to see some faces from our ‘normal’ lives. However, we also had to cancel visits from my father and Carolyn and my nephew George at the last minute because of the timing of the three procedures. It is very difficult to get the balance right and we hope that everyone understands that sometimes visits will need to be cancelled at short notice. Ned really is very, very ill and sometimes it’s just not possible to see him.

So, as we were told yesterday, we are now in a period of very slow, often painful and almost always anxious progress. It feels relentless at times and I know that I haven’t handled it particularly well today. It is my own fault and unless I get some sleep it is not going to sort itself out. Clare and I have talked about this and decided that I should go to Ronald McDonald House first thing in the morning before the doctors’ rounds so that I don’t get drawn into the day’s plan and worry about what’s ahead. With any luck, I’ll get enough sleep and be able to give you a more enthusiastic update tomorrow night!

As always, we are ever so appreciative of your messages of support. Even though I am currently an irritable over-protective and over-sensitive dad, I still love reading them. It’s also very comforting to get messages in the middle of the night when I am, as now, sitting by Ned’s side. Many of these are of course from friends around the world in different time zones, but some are from home (perhaps fellow insomniacs?), and it is lovely to feel that people are with us in spirit. Right now for example, I know that a group of friends in Cirencester are holding their third all night prayer vigil for Ned. Words cannot express our gratitude and we are humbled by the love and support being sent to us.

Thank you so much.

(By the way, whilst I have been writing, Ned’s blood pressure has gone up to 69/39, which is acceptable. It will almost certainly go up and down a few times before dawn. He is a little minx.)


Ned as he is right now in bed. He’s looking a bit worse for wear today because of his three procedures and is wrapped up to get his core body temperature up which will help his blood pressure

26 thoughts on “It’s all about blood pressure. And sleep.

  1. Katie Tampkins

    Bless you. I’m so sorry that Ned had to be pulled and pushed around so much yesterday, bless you Ned. You are all still massively in our prayers and thoughts and I know lots of people who are unable to sleep or wake in the night with Ned on their mind and on their heart and are prompted to pray for you all.
    I will not stop praying for his healing but am now also praying that you will be able to get some much needed restortive sleep this morning, that for those hours away from your precious boy you will be free of fear and guilt.
    Lots of love to you all, Katie xx (from fufs)

  2. James Whistler

    Oh my word, the poor little chap really doesn’t look well in the last picture, does he? However much I know about how he’s improving (thanks to your amazing efforts, Andy), it really does hit home how poorly he is when I see a picture like that. Blimey.

    You and Clare are taking brilliant care of Ned – just make sure you try and take some care of yourselves too. I know other people on here have commented to that effect, and I know that you are both fully aware of it, but do try and get some sleep; if not for yourselves then for Ned.

    Take care.

  3. Julie and Steve

    It must be so difficult to see your precious son going through all these procedures but Ned continues to battle his way through with the support of his loving family. Our love and thoughts are with you all as always.

  4. Pettifers

    Oh Andy, you have been quite a star throughout this yourself, so I hope you are able to get some much needed sleep in order to keep supporting Edward and the rest of your family as you have been doing. You will all be exhausted by both lack of sleep and coping with the ups and downs of Edward’s condition – the effort of being in a permanent state of desperately hoping for the best is completely draining in itself.

    Thank you for sharing the good news that Edward is continuing to fight everything this dreadful infection has thrown at him, and for the really good news that his heart has not been affected. Clearly it is hard for you both to watch him being subjected to yet more procedures when your first instinct is to protect your little boy from pain and upset, and you both deserve medals for having to do just that. Also amazing and reassuring to know that Edward is still alert enough to communicate with you.

    As ever, our thoughts and prayers are with you all, all day and every day, our first thoughts when we wake and our last thoughts when we (the fortunate ones) go to bed at night.

    Take care Andy, and sleep well, you so need it and deserve it.

    Sandra & Alex

  5. Helen Simpson

    Hi! It’s really good news Neds blood pressure improved last night. I hope your plan to go to RMH has worked ok for you this morning. It’s so lovely and calm there compared to the noise and bustle of PICU. I hope you’ll get some rest and feel restored when you go back to do another bedside session. It’s wonderful Ned has such amazing, dedicated parents and understand why it’s so hard to leave his side. I hope that Ned too has a calmer, more peaceful day after all the tests yesterday. Sending love, Helen

  6. Cally, Stu and Jude

    I hope when you read these replies it’ll be much later in the day as you’ll have been tucked up fast asleep Andy 🙂 It’s so natural to want to stay by Ned’s side. Your heart is telling you one thing and your head the other. You must all be exhausted….yet you still find time to write, and write so beautifully too.

    We’re so glad that Ned is continuing to fight when he is being put through so much. For a four year old he has the strength of an ox. He’s remarkable. You all are. Our thoughts and prayers are with you all. Please give our love to Clare, Jen and John too. And a big hug for Ned.

    Cally, Stu and Jude xxx

  7. Martin streets

    Thankyou for the constant updates Andy. I think everything that can be said about everyone’s love and admiration for you all, has been said. We’d honestly give anything to help him turn that vital corner.

    But thank god you have him. And thank god he has you and Clare xxx

  8. Lizzie

    Praying for both you and Clare to get rest and peace. Glad the heart echo went ok. Poor boy we really are praying hard here. Hope today is a day of improvement especially with his blood pressure. I found Psalm 91 really helpful when praying for him last night. God bless you guys oh and baby Sammy sends cuddles to his favourite Clare again xxx

  9. Bridget

    Rest up Andy, Ned needs you intact. Be gentle with yourself, it’s all completely understandable! Love to Clare and Ned. Healing thoughts are with you. Bridget x

  10. Lorraine Henry

    All about the blood pressure is right and it seems to apply to you too Andy!!. Your beautiful Son has an amazing team and support network doing all they can to bring him through this infection,, however it can’t afford to have you collapse with exhaustion and anxiety. I can only try to imagine your despair and I know I can’t come close to knowing but I urge you to rest. You’ll still pace around and be overprotective but in a more refreshed manner. Hope that Ned also gets a less invasive and more restful day too. Much love to you all. xxxxxxxxxx

    restmore so you can pace faster and be more energetic in your overprotective moments. Stay strong

  11. Kerry

    Thanks for the update Andy.
    None of us can even begin to imagine what you and Clare are going through and how mentally and physically exhausting this is for both of you. You’ve both been amazing throughout and its understandable that you feel the way you do. It must be one continuous emotional roller coaster, you are both incredible parents . As hard as it must be to leave Ned’s side, try and get some sleep, it will help you and Ned. Like so many people I have Ned in my thoughts constantly and continue to pray for him all day long.
    After such a long day of tests yesterday I hope today will be more restful for Ned.
    Ned, you’re one amazing little boy, you’re doing great, keep fighting little one.

  12. simon

    Hi Andy,
    It felt really good to see you yesterday. I really appreciated that in the midst of everything you were concerned enough to warn me about how Ned would be looking when I saw him. The thing that really surprised me, despite your post last night, was how up-beat both you and Clare were. I know that was before a day of tests and procedures, but I was expecting you both to look utterly drained and exhausted, and yet you both seemed remarkably bright and positive.
    Your opposite ways of dealing with all of this – you fascinated about every last detail and wanting to understand every single thing that is happening – Clare avoiding even looking at the NASA control station behind NED – obviously works well for you and is I’m sure in Ned’s best interest, and between you your confidence that you are in the best possible hands despite the setbacks was very very reassuring.
    I also loved your story of your three hours of mad singing and dancing for him, and seeing the direct positive result of that on his monitors, so you need to get some rest so that you have enough energy to do that on a daily basis! Who need a gym when you can be singing and dancing to make your son better!
    Keep up the amazing job you’re doing, and we will all continue to send our positive thoughts and energy your way!
    Lots of love from the Tappings x

  13. garry stoner

    agreed RMH could be the answer for you Andy, if you still have difficulty dropping off I will send you a copy of my monthly report for June – that will certainly send you to sleep!! ( in joke folks apols ! ) Andy, I can understand the dilemma you feel – not wanting to get in the way, but still wanting to be 100% involved – I was the same when our daughter was in hospital with pneumonia, the doctors, lets say were very direct, whilst remaining understanding, quite a skill, but I got the message, although in the end you have to do what you feel is best I think. We are right with you guys – you are both doing a such terrific parenting job. Prayers are with you – from Garry and Julie.

  14. Pam

    Another very tough and anxious day for you all with Ned having to go through yet more procedures. It is truely amazing that Ned is battling through this terrible infection, but as everyone is saying, he really is a fighter and has obviously no intention of giving into it…you are a star Ned. I do hope that you have managed to have some restful sleep Andy as you will be able to face the new day with strength and clarity. We all continue to have you in our thoughts and prayers Ned and all your loving family too.
    Love Pam xx

  15. Jools

    I’ve been, several times, over the years, an irritable, over-protective and over-sensitive mum – it comes with the territory, Andy – and it got my daughter to where she needed to be. It’s a tough gig when you’re in it and then you look back and don’t regret a single moment of it!

    You are an extraordinary family, just like us, and you will get Ned to where he needs to be. Belief counts for so much at times like this, so keep the faith and keep on being the amazing dad you are.

    Sending you all love and strength to face another day together,

    Jools xx

  16. Hugh & Hanneke

    Worth remembering Andy that a normal fit person’s BP goes up and down a lot during the day !
    I can imagine your continuing desperate anxiety about “is everything being done right”; been there with my own kids in hospital – even worse as a doc !
    We continue to pray for you often and in the night ! Especially now for sleep for yourself; how irrational we can become when sleep deprived.
    We remain in awe of both Clare’s courage and yours in all this and especially Ned’s.

  17. Kristina Gray

    We are praying for Ned and the whole family at this time. You are often input thoughts since a friend on Facebook shared your blog.

  18. Julie Shum

    Morning Ned, morning all, hope this message finds you Andy sleeping soundly and the amazing mummy still calm and smiling, as for the grandparent,as you know I am in awe of you both and keeps sending so many positive thoughts and prayers that even the great one must be sick of hearing my voice lol.
    As for Ned , how strong are you, our little fighter ?? keep up the good work we are so all willing you on.
    Everyone here in Chesterfield are following your progress and I am doing as I promised will daily Phone calls.they in turn are keeping everything crossed for you sweetheart.
    As for me…. well I am telling anyone and everyone about our amazing ‘Ned’ I am just trying to avoid the men in the white jackets who seem to be following me round, talking to random strangers and begging them to pray isn’t the done thing in Chesterfield….. who cares , you are so worth it hugs love and kisses to you all,, and of course give my love to Alice and Arthur xxxxxx speak later brave boy xxxxxxxxx

  19. Ann Ogle-Skan

    I have some very small inkling of what you are going through, having watched John being ventilated and sedated, for 2.5 weeks, with Ketamin (Alison called it Michael Jackson juice – which wasn’t necessarily helpful!) One of the worst times was when he was waking up and trying to speak – my lip reading skills weren’t quite good enough and he got very irritated with that. I’m sure that Ned will find a way to communicate and you are all much in our thoughts and prayers. Ann 0-S

  20. Claire Brun

    I was told about Ned by a friend of mine Dodie Kurshid. I felt compelled to write to you to let you know that even people who do not know Ned or his family are thinking and praying for him. Your descriptions of the marathon of medical procedures that your son is enduring is mind boggling and the strength of all your family in handling all of this is inspirational. I wish you all the best of luck and am praying that your little warrior pulls through.

  21. Natalie Baird-Clarke

    I really hope you managed to get some rest overnight Andy. Don’t beat yourself up – you sound like you are being the most amazing Dad in the world.
    Keep up the good work Ned!
    Love to you all,
    Natalie & Isabella xxx

  22. Fran and Malc

    We are so glad that Ned is climbing the mountain small step by small step, but are so sorry that he has had to go through s o much yesterday. Hope that today will be a better day for him and that he will be able to rest and sleep. Keep it up dear little Ned.
    Take care of yourself Andy and get some well needed sleep. You need to sleep to be able to look after Ned which you are both doing so wonderfully.
    Please give our love to Clare and Jenny and John and take good care of each other.
    Thinking of you constantly and sending our love as always.
    Fran and Malc xxxx

  23. Akan Huseyin

    I feel for you Andy keep listening to the wife hey. You’ll get there! Funilly enough my wife just got judgement that her two daughters age 13 and 11 will remain with their father and contact is very poor for her/us. Reading your blog i realise there are some things i could have done better also. So thanks for that. Again as always i pray for you and your family to pull through these hard times Andy.

    Regards of the warmest kind


  24. Marcus

    Keep your spirits up……Ned is one hell of a fighter. Sending you all nothing but love and hope from Hollywood (the place place where supposedly dreams come true!). Keep fighting Ned, best name ever by the way 🙂

  25. LIsa & Pat

    Hey Andy, thanks for your truly beautiful and honest updates. Like everyone else, I keep checking back, desperate to just hear about a glimmer of a sign/some information from you that Ned’s is getting better/ out of PICU. We’ve been saying prayers and thinking about you guys so much and sending all our love and strength to Ned. I am totally mesmerised and in awe by his fight and will… he is one incredibly tough little boy and we’re right behind him every bit of the way. I really hope you do get some rest, to switch off your brain just for a little while and help restore the balance in your mind and body.
    Loves to you all X gajillions xxxx


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