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    SUPPORTING CHILDREN WITH CONGENITAL HEART DISEASE

    Warfarin machines - helping families

     

    warfarin

    Warfarin Machine and how they help families.

     

     


     

     

     

    This is written by Emma Anwar (Jay's mum)

     

    My son Jay, was born with tricuspid atresia and pulmonary atresia, which has resulted in him being on warfarin and needing regular blood tests every month to monitor his blood level, even if he falls or bump himself he might require a blood test, or if Jay was to become ill.

     

    All of these different thing can affect him and result in him needing to be checked, as you can imagine as a young boy who loves to be active, how often he accidentally hurts himself, having been given a warfarin machine, to monitor Jay at home with the advice of his cardiac nurse, this save us having to take Jay into hospital every time to have a blood test, the warfarin machine help make life so much easier as its only a finger prick test and not a blood test as Jay hates hospitals and can become scared.

     

    The warfarin machine also allows us to spend more time as a family, where don't have rush to the hospital when hurts himself, he can be checked anywhere, allowing us to carry on with our day.

     

    Jay warfarin machine is such amazing piece of equipment to have, we really don't know what we do with it.

     

     


     

    Kacey & her INR Home Testing Machine

     

     

    kacey1

     

    Kacey was born with hypoplastic left heart Syndrome where only the right side of her Heart devloped fully after her 3rd planned heart surgery to help her function without a left side, she was placed on Warfarin medication for a lifetime to reduce the risk of her blood clotting, allowing the heart to function as best as possible.

    After being placed on Warfarin Cardiff Children’s hospital then advised us that we can now test INR levels at home using their new machines (at the time) that allow parents to take blood samples in a similar way diabetics do and using a similar machine to record INR levels.

     

    kacey2

     

    The Childrens Hospital gave us parents training on how to use the machine and how to carry out the processes in order to take Kaceys’s INR effectively. They would not sign us off as comptetant users until they witnessed we were able to carry out the task efficiently by observing us going through the process’s and using the machine exactly how we had been trained.

     

    The training is not difficult and the support during and after has always been great, we found it took a few goes in order to get your own way or feel of what works best for you and then it becomes like riding a bike.


    The nurses gave us some great advice about how to encourage Kacey to embrace having her INR taken and not be afraid by giving us little tips such as use child like plasters and have Kacey become involved in the setting up of the machine ready for her test so that she feels part of it and part of life.

     

    kacey3 kacey4

     

    As parents having this machine has been wonderful, it allows us to carry out a normal life and it also doesn’t intervene with Kacey’s education.


    We Feel Kacey has enough time spent in hospitals and spends enough time around DR’s and Nurses with this machine it means one less DR for Kacey to visit, One less trip to hospital, More time in School and having fun.


    We only now have to visit every so aften so that our liason Nurse can make sure we are still competant in using the machine (by observing us take Kacey INR) and we are competant in when to take extra tests and what can effect an individuals INR (by verbal question and answers). This can be daunting but you get used to it and we think it is a great idea as it keeps you on your toes.


    As parents we are so happy we get to use this machine and hope that all other families who have children who take Warfarin have the opportunity to have one making life a little easier for all.

     

    Kelly Davies
    Mum of Kacey aged 6
    Caerphilly South Wales.

     

     

     

     

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