Great North Run 2018 for Riley Thompson
I am running the great north run again 2018!!! for CHUF because They saved our little boy .
CHUF'S aim is to raise money to buy equipment, facilities, aftercare and research for the Children's Heart Unit and the Paediatric Intensive Care Unit at the Freeman Hospital. Helping people achieve their dreams! #CHUF
Charity Registration No. 1160831
I must be a sucker for punishment because before I left the chuf tent on the day of the race I had already signed up for 2018 !!!
I can't wait to run it again this year for CHUF . Just hope this ankle holds up until then !
We met so many kind people from all walks of life who wanted to help us raise as much as possible and I'm hoping this year we can make as much or more than last years total .
I'm forever grateful to you all . For those of you that haven't read Riley's story of if you just want to remind yourselves please read it below .
Tommo (John Thompson )
On the 5th of September 2016 we welcomed our beautiful baby boy at the Royal Victoria Infirmary in Newcastle. We were told during the 20 week scan they may of been a problem with his heart. Our world quickly turned upside down. From then on we attended the fetal medicine unit for regular scans and check ups .
The CHD Riley was diagnosed with was called "Coarctation of the Aorta" a narrowing of the artery which would restrict blood flow to the lower half of his body when he was born .
I believe of it wasn't picked up on during the scan he wouldn't be with us today .
He was perfectly normal when he was born and even had time for cuddles before being transferred to the Freeman.
Once there he had a first settled night but things quickly deteriorated in his second day of life .
The coarctation was more severe than they had first thought And the lower half of his body was lacking the blood it desperately needed . This resulted in Riley being rushed into intensive care and having an emergency operation to remove his large intestine as the lack of blood was that significant it had killed it off .
Things weren't looking better on the third day and the decision to fix the coarctation was made despite him being still very sick from the previous surgery. They had also found a very large VSD ( hole in the heart ) which was allowing blood to travel back to the lungs rather than pump around his body.
He was in theatre for nearly 10 hours when we received a phone call to say he was still in theatre but the doctors needed to talk to us. Our hearts sank as we made the long walk to the ward.
They told us that he was very very sick and they had made the decision not to fix the hole in the heart as he wouldn't of survived it. They informed us that Riley would be coming back on life support called ecmo and that he may not make it through the night . The next 48hrs were critical.
Riley's tiny body needed to rest and so he remained on the ecmo for a verylong ten days .
The decision to take Riley off ecmo was taken away from the doctors as Riley suffered a massive bleed and in order for him to survive his body needed to kick back into gear for them to successfully take him off it .
Every single day Riley continued to fight and prove people wrong. He was settled and the main thing safe .
He struggled coming off the ventilator and after a few scans they decided the VSD was very large and needed to be fixed for him to continue making progress. This was open heart surgery and very risky especially with what he had already been through. He had the operation on the 3rd October.
During the operation he had a lot of arithmias and SVTS where his heart rate would plummet or rise to over 300bpm.
He came back on a pacemaker with his chest open as his tiny heart was swollen and by closing his chest would of increased the risk of him having a cardiac arrest.
After he had his chest closed on the 5th we noticed that his breathing looked laboured and once again he had a cat scan and an ultrasound. This showed that the left side of his diaphragm was working in the opposite way to what it should be. A damaged nerve from previous surgery. To fix this Riley needed yet another operation which he had on the 13th of oct , this being his 5th operation .
Riley recovered well from the op and was taken off the ventilator the next weekend . 43 days we were in intensive care and the time had come to go downstairs to the ward . It was scary and exciting all at the same time .
While on the ward Riley had another operation, this time to fit a Hickman line . A semi permanent access line for meds and nutrients.
After 2 more weeks on ward 23 and a trip over to the rvi for the gastro team to review him for 2 weeks , the day had finally come to take Riley home .
He will need at least 1 more operation in the near future but hopefully will be fighting fit for It. We are just focusing on being a family and involving Riley's older brother Tyler, with as much as possible.
Our little CHD warrior is doing well. He has gone through more in his first month than I could in my whole life and for that reason he truly is my hero. A little Spartan through and through.
While in hospital he also battled e-coli ( which he got from the ecmo circuit) and 2 lung infections .
We are still going for 6 monthly check ups for Riley .
Update March 2018!!!!
They have told us that he has a narrowing on the pulmonary side of his heart and that most likely will need another operation in the future .
When we were over in the freeman we met people from all walks of life, all of which were going through the same heartbreak. We met friends for life . Two of these remarkable little warriors unfortunately didn't make it , the night sky Is definitely brighter with these little stars.
It's not just for Riley I want to do this , but for all the children and parents who have to go through this.
A little about the charity that helped us .
CHUF - Children's Heart Unit Fund
CHUF Has not only supported Riley by buying the life saving equipment that the NHS simply can't afford but have also helped our other little boy Tyler .
They offered him a place to play that he could forget about it all and just be a kid again. They provided games consoles , clown doctors and play specialists to help do things with Tyler while we were in meetings with surgeons and doctors . ( they also did Riley's first hand and foot impression for us while we were out ).
They made it possible for us to use local facilities and most importantly stay together as a family .
CHUF help thousands of family's going through similar things to Riley and run totally on donations .
We held a charity fund raiser in Riley's name to raise funds for CHUF to make a difference to other people's lives like they did to ours .
We held it on the 14th of January at Aspatria rugby club . We had a raffle , name the teddy and even auctioned off a signed messi Barcelona shirt .
We raised a total of £3,000 at the charity night. A total of 868.10 was raised in the great north run 2017 . Exactly 1year and 5 days from when we started our journey. I have decided to run it again this year .
All of this is our way of saying Thankyou to everyone that has touched our lives on this journey so far .
Any donation would be greatly received for this worthy charity.
Please help us reach our new target of 1500 . And help more heart hero’s like our little Riley!!
Thank you so much
Riley's very proud daddy
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