Edward’s Funeral: Donations

As always, thank you for all your lovely messages.

Many of you have been asking if you should send flowers or if there is a charity that you can donate to. Clare and I would prefer not to receive flowers and ask that you consider making a donation to a wonderful little charity called Little Hearts Matter, who have been of immense support to us during Edward’s 4 years with us. I have set up a fundraising page (link below) and we would be enormously grateful if whatever you might have spent on flowers could be used to help another child and family affected by Edward’s condition. Thank you.

http://uk.virginmoneygiving.com/EdwardWheatley

Funeral Arrangements

Dear friends,

Edward’s funeral will be at 1.30pm on Friday 9th August at the Parish Church of St John the Baptist in Cirencester. It will be a celebration of his life and personality. In view of the amazing support that we have had it will be an open funeral and we welcome anyone who knew him to come and share the occasion with us. There is no specific dress code apart from smart and children are invited to come in fancy dress if they wish as this was one of Ned’s favourite things. It will be a child friendly service and kids will be well looked after.

There will be a private cremation in Cheltenham afterwards, after which we will join everyone else for some refreshments at a venue still to be confirmed.

The church is very easy to find – it is a beautiful and historic building that dominates the Market Place which is right in the heart of town.

Clare, Alice, Arthur and I look forward to seeing you there.

xx

Journey’s End

How I wish I was not writing this post. This is the ending that was never meant to be. From the day I started this blog and every day until Saturday, it never crossed my mind that we would leave The Evelina without Ned. How could we? The fontan procedure has a failure rate of less than 5%. Ned had flown through two far more difficult operations. This was the easy one. He was strong, defiant, unbeatable. Yes, there had been moments of incredible anxiety but he always responded. And yet, today, we are bereaved parents, consumed by grief and scarcely able to believe what has come to pass. Continue reading

Update

Thank you for your kind messages of support – Clare and I are enormously grateful. I’m afraid that I cannot yet find the words to respond or express the sense of loss and depth of anguish that has consumed us. Our hearts are broken.

We are with family in Bristol now, and will be making a very difficult and emotional return to our home in Cirencester this afternoon. To our many lovely friends who will see us, please forgive us if we find it hard to talk to you. We are going to need plenty of time and patience.

I would also like to ask those of who on Facebook not to tag or ‘like’ any pictures of our family and especially Ned. I know that your intentions are supportive and loving, but it is simply too much to bear right now.

Andy

Ned

Edward ‘Ned’ John Cardoza Wheatley passed away just before 5.30am this morning, peacefully with our arms around him. He was surrounded by love every day of his life.

xxxxx

Update

Your love, prayers and support have helped to hold us together these past few weeks and we thank you all. However, it is with the heaviest of hearts that I have to tell you that our beautiful, brave and handsome boy is slipping away. There is nothing now that can be done for him. All that remains is for us to decide when to withdraw and to let him go. There is of course hope, but it is only that, and we are at peace with this.

He has fought the greatest of battles and it is up to him now to leave on his own terms.

Thank you all so, so much for your love.

Update

After the euphoria of yesterday, it is now back to the painful grind of reality. Ned is very, very sick and his life remains in the balance. We are back to the hour by hour battle to maintain his blood pressure at a sustainable level whilst his body fights the sepsis caused by the infection.

He is having to be pumped full of fluids to keep his his blood pressure up, but each time this fluid slowly leaks back out until the pressure drops again, and the cycle is repeated. This is not sustainable, and we need to hope and pray that this damn sepsis, which is causing this problem, leaves him soon.

I don’t have time to write long updates at the moment. He is so unstable that we simply just don’t know what is going to happen next and our time with him is extremely precious. Last night’s operation bought us time, but not much else.

Please, please, please keep sending your love, prayers and support. I believe that it has played a huge part in sustaining him this far.

Update

There is very little left of us, but we still have Ned. He is back in PICU and obviously critically ill, but he is still, still fighting. I am completely incapable of writing the blog tonight. In fact I’m in pieces, but they’re happy little pieces. Thank you, everyone, for your love and support.

Once again, we need your help

Friends, I am afraid that I have to tell you that Ned has, despite all our efforts, once again deteriorated. He is now so weak that he is unexpected to survive without emergency heart surgery this afternoon. This surgery is itself extremely risky and he has less than a 50% chance of survival. We have discussed his options with the cardiology team and have all agreed that this is his only chance. Surgery is due to commence at around 2pm and will last 5-6 hours.

He has proven again and again that he is a fighter but we must now leave his fate with him and his surgeon.

I would like to thank you all from the bottom of my heart for all the love and support you have given us and ask, once again, for another huge collective force of love, prayers and hope.

Thank you.

Andy & Clare

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. Continue reading