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    SUPPORTING CHILDREN WITH CONGENITAL HEART DISEASE

    Rhys's Story

    After I was born mummy took me up to the ward and in the night Daddy was admitted to my hospital!!! SCARY!! But we were both well enough to leave the next morning,, mummy was very pleased,,, and shattered.

    At one of my checks a doctor told mummy that I had a 'murmur' mummy didn't know what this meant and was quite scared. After a while the doctors told mummy and daddy that I had Subaortic Stenosis,,,,hmmmm even more scared now, but I looked so well they didn't really worry too much.

    I have had scans and checks for the past 4 years and now mummy and daddy have been told that I have to have Open Heart Surgery to make my little heart better. The lovely doctor at Cardif Hospital said he wanted to wait until I was about 12 years old,,,as old as my big brother,,,that's AGES away. BUT,,,, there's always a BUT my mummy says,,, the naughty bit of my heart is not behaving and is getting worse, so mummy and daddy think it may be sooner than that.

    I run around like a mad man most of the time but I do get a little breathless at times, sometimes I can't keep up with my friends at school, but mummy says that's ok because I'm special.

    I am going for my next scan in January and mummy and daddy will find out how my heart is behaving then.

    I go to school now, so I am quite tired at night times, but I've always been an early riser and I don't want mummy to get out of the habit so I get up early every morning just for her!!

    I had a dream the other night,
    It came to me so clear.
    I stood before the throne of God,
    afraid to come too near.
    God said to me “I hear your prayers,
    there’s answers you can’t find.
    I asked you here to talk to me
    and help to ease your mind”
    I said “Well yes God, I am disturbed
    about my special one.
    That punishment is awfully harsh.
    Whatever have I done?”
    God looked at me and shook his head
    and said “You’ve got it wrong.
    I sent this special child to you
    because you are so strong”
    “I searched and searched to try and find
    someone with love so rare.
    A parent so unselfish they could
    give that special care.
    I try and save my special gifts
    like those your speaking off
    or special kinds of parents
    I call the chosen ones”
    Of all the ones to choose from,
    I think this I have done.
    A parent who deserves my best,
    an honor you have won.

    I think my baby is my special one xxx from Rhys's mummy xxx

    Thursday, 8 January 2009
    Appointment 26th Jan
    Mummy has finally received the letter,,, don't know why she stresses so much!! lol
    My next appt is in Cardiff,,,,again! with Dr Anuzo,,,, guess its time for:
    Jelly on the Belly
    See my Heart on the Telly

    Mummy is quite scared,,, daddy too,,, oh and don't get me started on Owen, good job I'm only 4 and have no idea what it's all about !!
    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 !!!!

    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


    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

    Posted by Rhys's Story at 14:11 0 comments  Saturday, 15 August 2009

    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

    Sunday, 16 May 2010
    Posted by Rhys's Story at 10:59 0 comments  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 :)

    rhysohsDue 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.

    RHYS OHS Feb 10 052 RHYS OHS Feb 10 057

     

     

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