Sunday, 16 May 2010
Rhys Open Heart Surgery
After lots of waiting I finally got my date for surgery at Bristol.
18th February 2010!!!! Mummy is finding it really hard to update here as going over it again and again brings back all the memories, so here is an article written by mummy, it gives the basics and I know when mummy is stronger she will update the full story :)
Due to the huge demand on surgeons and beds in Bristol Children's Hospital Rhys' operation was cancelled twice, this brought immense pressure on the family, preparing for the journey to be told that there is no room for Rhys this week. Eventually after a long wait Rhys had his date for surgery, February 18th 2010. The next week was a mixture of shock, denial, fear, hope and eventually relief. After 3 ½ hours in surgery Rhys emerged, the operation had been a success. Mr Stoica, one of the heart surgeons at BCH had opened Rhys' chest and cut away the growth which was causing the life threatening condition. Thankfully Rhys' valve was not too damaged and at this stage did not need to be repaired or replaced. Rhys was placed in PICU (Peadiatric Intensive Care Unit) where he had no intentions of playing by the book! Although deeply sedated and ventilated, Rhys decided to wake up very suddenly and gave the doctors quite a fright as he tugged at the chest drains, and wires which were attached to his little body. The doctors and nurses then sedated and paralysed Rhys to ensure he did not rip out the cannula stitched into his neck. Despite this Rhys started to come round much quicker than Tracy or David had expected and was soon telling his mum and dad that he was 'starving'.
After 2 nights on PICU Rhys was allowed back onto Ward 32, Cardiac Ward. It was a difficult few days, where Rhys was quite depressed for a period of time. However, after 4 long days on the ward, it was decided that Rhys could go home, the news Tracy and David had been hoping and praying for.
So now Rhys is 'stable' heartwise, he still has a small growth, although the leak has stopped. This CHD can reoccur, and if this happens then Rhys will have to undergo more Open Heart Surgery. Tracy and David are happy to take each day as it comes, and hope with all their hearts that Rhys continues to be a healthy, happy little boy and that his special heart continues to beat strongly.
18th February 2010!!!! Mummy is finding it really hard to update here as going over it again and again brings back all the memories, so here is an article written by mummy, it gives the basics and I know when mummy is stronger she will update the full story :)
Due to the huge demand on surgeons and beds in Bristol Children's Hospital Rhys' operation was cancelled twice, this brought immense pressure on the family, preparing for the journey to be told that there is no room for Rhys this week. Eventually after a long wait Rhys had his date for surgery, February 18th 2010. The next week was a mixture of shock, denial, fear, hope and eventually relief. After 3 ½ hours in surgery Rhys emerged, the operation had been a success. Mr Stoica, one of the heart surgeons at BCH had opened Rhys' chest and cut away the growth which was causing the life threatening condition. Thankfully Rhys' valve was not too damaged and at this stage did not need to be repaired or replaced. Rhys was placed in PICU (Peadiatric Intensive Care Unit) where he had no intentions of playing by the book! Although deeply sedated and ventilated, Rhys decided to wake up very suddenly and gave the doctors quite a fright as he tugged at the chest drains, and wires which were attached to his little body. The doctors and nurses then sedated and paralysed Rhys to ensure he did not rip out the cannula stitched into his neck. Despite this Rhys started to come round much quicker than Tracy or David had expected and was soon telling his mum and dad that he was 'starving'.
After 2 nights on PICU Rhys was allowed back onto Ward 32, Cardiac Ward. It was a difficult few days, where Rhys was quite depressed for a period of time. However, after 4 long days on the ward, it was decided that Rhys could go home, the news Tracy and David had been hoping and praying for.
So now Rhys is 'stable' heartwise, he still has a small growth, although the leak has stopped. This CHD can reoccur, and if this happens then Rhys will have to undergo more Open Heart Surgery. Tracy and David are happy to take each day as it comes, and hope with all their hearts that Rhys continues to be a healthy, happy little boy and that his special heart continues to beat strongly.
Monday, 8 February 2010
2 Cancellations and still waiting
Well I had a date in December for my OHS,,,but it was cancelled due to emergencies and sickness on the ward :(
Then I got another date in January,,, this was cancelled again due to emergencies and my swab results came back with Strepptoccal Pneumonia in them !!!
Mummy has been tearing her hair out with worry waiting for a new date, I don't know what all the fuss is about :)
Today mummy spoke to the lovely secretary at Bristol who said my surgeon wants another surgeon to be there when he operates??? Mummy is not sure why, but 2 heads are better that 1 :)
So now we wait again and the mummy says it won't be until March,,,,,,,
So I get to have a bit more time to play with my friends and mummy gets a bit more time to stress out,,, chill out woman :) xxxxxxxxx
Then I got another date in January,,, this was cancelled again due to emergencies and my swab results came back with Strepptoccal Pneumonia in them !!!
Mummy has been tearing her hair out with worry waiting for a new date, I don't know what all the fuss is about :)
Today mummy spoke to the lovely secretary at Bristol who said my surgeon wants another surgeon to be there when he operates??? Mummy is not sure why, but 2 heads are better that 1 :)
So now we wait again and the mummy says it won't be until March,,,,,,,
So I get to have a bit more time to play with my friends and mummy gets a bit more time to stress out,,, chill out woman :) xxxxxxxxx
Friday, 16 October 2009
On the list
Mummy got a phonecall today from the lovely lady at Cardiff. The doctors from Bristol have decided that I am to have my heart fixed soon. They have put me on a waiting list............
Mummy will update when she knows more
Mummy will update when she knows more
Saturday, 15 August 2009
Got another little problem with my heart
I went to see the lovely doctor Onuzo at Cardiff and he told mummy and daddy that my aortic valve has started to leak, this means he now needs to talk to MORE doctors at BRISTOL to see if they want to meet me now!!!
xxx
xxx
Tandem Skydive
Mummy is going to do a tandem skydive to raise money for HEARTLINE, I think she is really brave as she doesn't like heights!!!
You can help her be brave by sponsoring her if you can go to www.justgiving.com/tracysobey
Thank You
Oh mummy is doing this on Saturday 29th August, the day before her birthday xxx
You can help her be brave by sponsoring her if you can go to www.justgiving.com/tracysobey
Thank You
Oh mummy is doing this on Saturday 29th August, the day before her birthday xxx
Sunday, 21 June 2009
I am 5!!
Had a lovely birthday and a fab party with all my friends, mummy has put some pictures on too!
Friday, 17 April 2009
Really been neglecting this!!
Sorry but mummy has been so busy with work and half term taking car of me and my big brother that she hardly has time to go on the computer!!!!!!!!!!!!!
Nothin is happening much,,, I was in the paper,,,,,,,,,,, search southwalesargus,,,,,,,,,,,,,, rhys sobey,,,,,,,,,,,,
it's my cousins 18th birthdya on sunday so we are all goin out for a meal 2moro xxxxxxxxxxxxx
spk soon xxxxxxxxxxxxx
Nothin is happening much,,, I was in the paper,,,,,,,,,,, search southwalesargus,,,,,,,,,,,,,, rhys sobey,,,,,,,,,,,,
it's my cousins 18th birthdya on sunday so we are all goin out for a meal 2moro xxxxxxxxxxxxx
spk soon xxxxxxxxxxxxx
Monday, 9 March 2009
24 hr ECG Results
The results came back and they were good,,, really good!!! no signs of arythmia and all relatively normal heartrates,,,, mummy and daddy are sooooo pleased!!! Dr Onuzo wants to see me again in 4-5 months,,, that will be around the time I am 5 !!!!
Sunday, 22 February 2009
Visit from Auntie Vicki
Had a lovely day today, Auntie Vicki came over,,,, we went to Scallywags Castle. Mummy was not sure who had more fun,,, Auntie Vicki and my brother Owen playing TAG, or ME????
Mummy cooked a lovely dinner,,,but Auntie Vicki just had the veggies,,,, she doesn't eat meat?!?!?!?!
Then we took Smudge for a walk,,, in our wellies,,, it was great fun and I picked up lots of sticks to bring home,,,, mummy always gives me a funny look when I do this, but I LIKE STICKS!!!
Mummy cooked a lovely dinner,,,but Auntie Vicki just had the veggies,,,, she doesn't eat meat?!?!?!?!
Then we took Smudge for a walk,,, in our wellies,,, it was great fun and I picked up lots of sticks to bring home,,,, mummy always gives me a funny look when I do this, but I LIKE STICKS!!!
Thursday, 12 February 2009
Fundraising for Heartline & BHF
Mummy had a special day in work today, she raised 400.00 for Heartline and BHF, I am so proud,,,, my big bro Owen says he wants to have his legs waxed to raise money,,,,, hmmmm
I think it will hurt,,,mummy is not sure he is old enough to do this!! LOL
AND mummy and daddy have a VERY special rugby ball to auction also to raise money for Heartline,,, you can see it here!!
http://cgi.ebay.co.uk/ws/eBayISAPI.dll?ViewItem&item=190286657211
I hope they raise lots of money xxxxx
I think it will hurt,,,mummy is not sure he is old enough to do this!! LOL
AND mummy and daddy have a VERY special rugby ball to auction also to raise money for Heartline,,, you can see it here!!
http://cgi.ebay.co.uk/ws/eBayISAPI.dll?ViewItem&item=190286657211
I hope they raise lots of money xxxxx
Saturday, 7 February 2009
24 Hr ECG
On 16th Feb I have to go to Cardiff to have my ECG Monitor put on, mummy says I have to wear it for a whole day then the doctors have it back and look at the results. Mummy also said I am not allowed to pull it off!!!!!!!! HMMMMMMMMM lets hope it doesnt itch too much then!!
Tuesday, 3 February 2009
CHD Awareness Presentation
Mummy has done this to talk to the big boys and girls at her school to raise awareness of CHD, she wants to thank all the families on Heartline who made it possible xxx
Hospital Appointment
Hello ,,, mummy is not very good at keeping this up to date is she!! I was due to go into hospital to have my Echo & ECG, but I ended up going in early cuz my heart keeps beating a bit fast. I didn't see the nice Dr Onuzo but a registrar, who was nice too. He did an ECG & ECHO and seemed happy that not much had changed from my last visit. Mummy and Daddy were really pleased about that.
I have got to have a 24hr ECG to see if my heart is goin a bit fast at times thru the day,,, we are waiting for an appointment to go back in.
Dr Onuzo has looked at the ECHO and he is happy to keep me on 6 monthly appts at the moment so that is good news!!! :)
I have got to have a 24hr ECG to see if my heart is goin a bit fast at times thru the day,,, we are waiting for an appointment to go back in.
Dr Onuzo has looked at the ECHO and he is happy to keep me on 6 monthly appts at the moment so that is good news!!! :)
Sunday, 11 January 2009
read,, sign,,,, HELP!! click on the link to see video
CHD Awareness
CHD (Congenital Heart Defects) is the number one killer in babies and children, it is more fatal than cancer. As there is still no national awareness in the UK, the majority of people do not seem to know an awful lot about chd, many people are totaly un aware that children and the young can have problems with their hearts, its still mainly associated with something only the elderly suffer from.CHD is an anomaly of the heart that is present at birth. CHD’s cause one or more portions of the heart to develop abnormally.There is no known cause for CHD.CHD is the number 1 birth defect and is the leading cause of birth-defect related death. BUT it is the least publisised of all the known birth defects.CHD strikes without regard to economic level, ethnic origin, sex, geographic location or religious beliefs. Aprox.16,000 infants are born with CHD each year in the U.K yet newborns are still not screened for CHD’s.Some babies may be diagnosed before birth or at birth, some not until days, weeks, months or even years later. Sadly, too many are not diagnosed until after death.There are 1.2 million children and adults with CHD alive today. CHD affects not only patients, but also their entire families too.Please help us to raise awareness by signing the petition HEREIf you are still in any doubt whether or not this is a worthy cause, then please watch this video, I think you will agree these children all deserve a chance .....
CHD (Congenital Heart Defects) is the number one killer in babies and children, it is more fatal than cancer. As there is still no national awareness in the UK, the majority of people do not seem to know an awful lot about chd, many people are totaly un aware that children and the young can have problems with their hearts, its still mainly associated with something only the elderly suffer from.CHD is an anomaly of the heart that is present at birth. CHD’s cause one or more portions of the heart to develop abnormally.There is no known cause for CHD.CHD is the number 1 birth defect and is the leading cause of birth-defect related death. BUT it is the least publisised of all the known birth defects.CHD strikes without regard to economic level, ethnic origin, sex, geographic location or religious beliefs. Aprox.16,000 infants are born with CHD each year in the U.K yet newborns are still not screened for CHD’s.Some babies may be diagnosed before birth or at birth, some not until days, weeks, months or even years later. Sadly, too many are not diagnosed until after death.There are 1.2 million children and adults with CHD alive today. CHD affects not only patients, but also their entire families too.Please help us to raise awareness by signing the petition HEREIf you are still in any doubt whether or not this is a worthy cause, then please watch this video, I think you will agree these children all deserve a chance .....
Subscribe to:
Posts (Atom)
