25 October 2010: With Evan's 1st birthday fast approaching, we have now launched a campaign to raise money for the Children's Hospital for Wales:
2 August 2010: We went to visit the team at PICU in Bristol again today. We were thrilled to see Dr David Grant (Evan's consultant) as well as William Booth (senior nurse) and some of the nurses who helped look after Evan. We also saw the plaque on the new equipment which was purchased with the money you all raised - fantastic!
26 July 2010: Evan had a big appointment at the University Hospital of Wales today - his first appointment since early March. Dr Onuzo was really pleased to report that his narrowed artery has grown, he's had no further episodes of tachycardia and that he can come off all his medication. This is the first time since he was born that he will be on no medication at all!
24 March 2010: Today was a very big day - we took Evan back to PICU in Bristol to say thank you for the outstanding care he received there back in November 2009. We met with William Booth (senior nurse) and Evan's lovely nurse, Louise. William could tell us that the money we have raised will buy three new ventilator display systems for PICU, a wonderful achievement. Thanks for all your donations towards this very worthy cause. We are now hoping to raise money for the paediatric cardiology unit at the University Hospital of Wales. We will update you on this when we know more ourselves!
8 March 2010: We are very pleased to say that Evan's visit to UHW today went well. The excellent Consultant in charge of Evan's care is satisfied with his progress and confirmed that only one of his branch arteries is too narrow rather than the two we had previously understood. He is confident that no further intervention will be required in 2010 and possibly even beyond if things remain as they are. It was as good a result as we could have hoped for and a well deserved boost for the bravest baby you can imagine. He continues to be happy, smiling and very chatty and is enjoying his first taste of solid food! He brings nothing but total joy to our lives.
7 March 2010: We did it thanks to all your generosity! We achieved our unpublicised target of £7,000 to buy a heart monitor for PICU. It is a wonderful effort by everyone, as well as great therapy for the three of us. Your generosity will give children like Evan the best chance of a healthy life which should be the birth right of every baby. From the bottom of our hearts, thank you very much, diolch yn fawr iawn.
22 February 2010: Just to let you know that we are beginning to think about closing down this part of our fundraising effort towards the work of PICU in Bristol who looked after Evan so well during his first few traumatic weeks. We have raised a fantastic amount for PICU thanks to all your generosity and we are hoping to meet with some of the staff that saved Evan's life in the course of the next month to "hand over the money". We will let you know what equipment is bought with the money; we think it's likely to be a heart monitor as part of a life support system.
We are aiming to transfer our fundraising efforts from mid March to support the University Hospital of Wales' paediatric cardiology team (Heulwen ward) who continue to look after Evan so well. Indeed, we have an appointment with the lead consultant on 8 March when we hope to have a clearer picture of Evan's recovery from his major surgery and we'll post an update on this site following that appointment. Evan continues to be a happy, contented and rapidly growing boy!
25 January 2010: Evan had a long and tiring consultation at UHW today along with a number of tests. The result of the consultation was probably as good as we could have hoped for. The consultant appears more optimistic that further surgery can be avoided as the narrowing of Evan's arteries has not worsened since 4th January. If this is the case during our next consultation in 6 weeks' time, then we can be hopeful that the problem will correct itself as he grows. All the doctors and nurses were really impressed with Evan's good humour and bravery despite some of the tests being pretty unpleasant.
4 January 2010: Evan had a bit of a setback today following a routine cardiac scan at the UHW. The doctors have identified a narrowing of his branch arteries and will be monitoring this closely over the coming months. It is a known complication following 'switch' surgery, but it has still come as a bit of a shock to us. It is possible that he he will require further surgical intervention in Bristol later this year to correct the problem using a balloon catheter. Otherwise he is doing well and all other observations were good. Evan is enjoying watching the snow!
31 December 2009: Evan has enjoyed his first Christmas at home with his Mam and Dad, as well as visits from his close relatives. Father Christmas was very kind to him!! Evan's got a busy start to 2010 with appointments next week at the cardiac clinic in the Heath, a weigh-in at the baby clinic and his first set of jabs at the GP's surgery.
14 December 2009: Evan is settling in very well at home; he particularly loves looking out of the window at the trees and birds outside. He had a real thrill when Father Christmas rode down the road in his sleigh last night with a bunch of singing elves! Evan has had visits from the GP, health visitor and cardiac liaison nurse, all of whom are very pleased with his progress. He is eating for Wales and is now starting to put on some weight, weighing more than his birth weight for the first time.
Evan is doing well with bottle feeding and had his nasogastric tube removed on Wednesday 2 December. He now weighs around the same as he did at birth.
Evan had a bit of a setback in the early hours of Thursday 26 November. He was diagnosed with SVT (supraventricular tachycardia), a heart beat irregularity. Peter and Sian were at his side as the doctors brought the situation under control with medication and he has remained stable since then with no further recurrence. He is such a fighter that he appears to have taken this latest challenge in his stride and he continues to inspire us with his astonishing bravery.
As of Tuesday 24 November, Evan was transferred back to the UHW in Cardiff to complete his recovery. We are so thrilled he is back in his home town for the first time since the day he was born. He continues to please his doctors with his recovery and is already something of a nurses' favourite on the Ward!
Sian and Peter are thrilled to let you know that as of 17 November, Evan has been transferred out of Intensive Care to continue his recovery on the Cardiac Ward. His progress in recent days has been as rapid as it has been heart warming. All being well, he is expected to transfer back to the UHW in Cardiff over the coming days to complete his post operation recuperation, though as of Monday 23 November he remains in Bristol to continue his recovery with his Mum Sian at his side 24/7 whilst Dad tries to shake off a really nasty virus in isolation at home.
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Evan Hywel was born to Sian and Peter Price at 8:21am on Sunday 1 November 2009, at the University Hospital of Wales in Cardiff, at the impressive weight of 10lbs 8oz.
Evan was born suffering from a very rare condition known as Transposition of the Great Arteries (TGA). In simple terms, this means that he is unable to breathe without a ventilator due to a serious structural heart defect.
Evan needed to have initial heart surgery the same day to keep him alive and this was carried out by surgeons who came from Bristol. He was subsequently transferred to the Royal Hospital for Children, Bristol, where he has been in intensive care on life support ever since. Evan underwent a further 6 hour open heart operation on Monday 9 November.
Sian and Peter would like to celebrate Evan's birth by asking family, friends, colleagues and well-wishers to help them to raise funds for the Paediatric Intensive Care Unit (PICU - fund number 54010) in Bristol. PICU is the lead centre for paediatric intensive care for the South-West of England and South Wales. They would also like to pay a glowing tribute to the team at PICU whose professionalism, compassion and dedication have inspired them. They have been humbled by the brilliance of the doctors and nursing staff who have given their most treasured son a chance to lead a normal life.
The aim is to raise funds to enable the purchase of extra equipment, so that more children like Evan can benefit from the amazing work carried out at PICU. Monies will go towards the cost of a new life-support machine. The majority of critically-ill infants and children admitted to PICU (around 80%) require assistance with their breathing: such children are attached to a ventilator, or life-support machine. Children who would benefit from this equipment include those having surgery (including open-heart surgery); those admitted following accidents; and infants and children with respiratory conditions or severe infections (such as meningitis). The life-support machine supports the child's breathing until they have time to recover, and maintains the correct levels of oxygen and carbon dioxide in the blood.
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