Get Adobe Flash player
    SUPPORTING CHILDREN WITH CONGENITAL HEART DISEASE

    March 2012

     

    Hospital for the first time     by Lisa Hine

    No one person can prepare you for your child’s first stay in hospital especially when he/she is having open heart surgery or any procedure relating to heart complications.  This is a time when you have to trust complete strangers with the care of your child, you have to let go..............

    Each experience is very different for every family; we all have to respect this when we enter into a world of un-certainty.   Your own child is of the upmost important without question, and we have to respect others around us also as ICU/CICU is full of babies and children with varying conditions.

    The full reality of this is we all want the best care for our child, and I feel after being in hospital many times is to let the nurses and doctors know (if you are able to handle) you are not afraid of being told the whole picture. 

    Ronald Mac Donald housing becomes home for many families in hospital and living here you may meet others who are going through emotional times and it’s always good to talk. We made some very special friends the last time we were in CICU and still speak now; we all seemed to be a shoulder when it was needed.  The hardest part is leaving your child when you are in ICU/CICU as you are not able to sleep there. So be prepared to having to say good-night and go and try and rest as much as you can.  As parents you need as much strength for each day that comes. 

    In ICU specially trained doctors and nurses will give your child round-the-clock care.

    Try not to be alarmed by all the equipment and tubes. Your child's nurse or doctor will explain the purposes of the types of monitors, support and medications your child requires. Each of them is necessary to support your child and will be used only as long as needed.
    The doctor may do blood tests, electrocardiograms, echocardiograms and chest X-rays to monitor your child's heart function. Your child may also receive intravenous medications to increase blood pressure or heart rate or to allow the body to get rid of extra fluid that builds up during open-heart surgery. Your child will be kept as comfortable as possible with pain medications and sedatives.

    Common types of monitoring and support used in the ICU include:

    • Central venous line (CVL, CVP or right atrial line): A small tube, called a catheter, that's used to give medications, fluids and to monitor the pressure in your child's veins. The tube is placed directly into the heart through the chest wall or through one of the large veins in the body.
    • Arterial line (Art line): A catheter that allows your child's blood pressure to be measured continuously. The tube is commonly is placed into an artery in the wrist, groin or feet.
    • Arterial Blood Gas (ABG): A test in which blood is drawn from the arterial line that gives information about how well the lungs and heart are working.
    • Oxygen Saturation (Sat monitor): A small monitor attached to the finger or toe that allows the oxygen level in the artery to be monitored continuously.
    • Mechanical ventilator (breathing machine): Many children need this to deliver oxygen to the lungs until they wake up from the operation and can breathe normally. The ventilator delivers oxygen to the lungs through a special tube called an endotrachial tube that's placed down the throat into the windpipe.
    • Continuous Positive Airway Pressure (CPAP): This special device is placed in your child's nostrils to deliver oxygen under pressure. It can keep the lungs expanded without the use of a mechanical ventilator.
    • Nasal Cannula: Small tubes placed into your child's nostrils that deliver oxygen into the lungs.
    • Chest tube: A tube that's placed through small incisions in the chest wall into the space around the heart or the lungs to drain fluid and air produced by the operation. Your child may have one or more chest tubes. The doctor will remove the tubes once the air and fluid drainage goes away.
    • Catheter: A tube that's placed into the bladder to drain the urine continuously and make sure your child's kidneys are working properly.
    • Pacing wires: Small wires that are placed through the chest wall and attached directly to the heart. If your child has an abnormal rhythm, these wires can be used to restore the heart's normal rhythm.


     

    After leaving the ICU, your child will go to a less intensive area of the hospital, often a Ward dedicated to heart surgeries.  In these areas, the medical team will monitor your child's heart rate and rhythm. You'll be able to play a bigger role in your child's care and will most likely be able to stay overnight in the room with your child or next to his cot/bed if placed on a ward of beds. Encouraging your child to do normal activities, such as playing, walking and going to the bathroom, will speed your child's recovery.
    The doctor may also prescribe medications such as diuretics, Warfarin and others. Your child may need to take these medications for some time after discharge from the hospital or possibly a lifetime. Some children may have a fever for the first few days after the operation. Normally by this stage pain medication that is given is Calpol/Ibrupofen.

    As a child gets better after heart surgery, the temperature becomes normal, feeding improves and there's no sign of fluid build-up, your child may take medicine by mouth rather than through an IV. The doctor will also wean your child off oxygen and remove special central lines.

    When the doctors are satisfied that your child is getting better, it will be time to go home. Your child's doctor may do a chest X-ray, echocardiogram before discharge to check the results of the surgery. The doctor may also prescribe pain medications or heart medicines. You'll be given instructions on how and when to give these medicines; be certain you understand the instructions before you leave the hospital. Your child's cardiologist or surgeon may stop or adjust your child's medications when you return for your post-operative visit.


     

     

    Written by Emma Hawksworth


    I found my first hospital stay with my daughter very frightening as it wasn't expected or planned. It felt very lonely and didn't have a clue who to talk to or what questions to ask the doctors and nurses. That soon changed as we were there 6 weeks.

    Here are few things I would have found useful at the time if I had access to the people and groups who could support me. It is so hard to leave your child with someone else when they are so ill. It is hard to remember that the nurses and doctors are doing what they do every day and it is normal for them so you have to trust them a great deal with your child. Sometimes we had to leave the cubicle or room as it was upsetting Amy so much with us there and her hearing my voice. It made her heart rate go up which they didn't want as she needed to rest. Be prepared for lots of noises from machines, which can sound very loud and scary. It is normal, and the staff are very experienced and if you ask they are willing to explain everything to you.

    For parents I would advise that you take plenty of essentials such as teabags, sugar, coffee, snacks etc. If there is a supermarket nearby, buy food from there as it works out a lot cheaper especially if you have a long stay. Make sure you look after yourself and get as much rest as possible as your child will need you lots when they are on the road to recovery. Also there will be other parents on the ward or in your accommodation that may have similar experiences to yours. I found it helpful to talk to some other parents. We are still friends now.

    Below are direct links to hospital and there guidelines

     
    NHS link on if your child goes into hospital

    Net Doctor on your child's stay in hospital

    Bristol Royal hospital for children

    South West and South Wales congenital heart centre


    Southampton’s Children’s heart hospital on Children’s stay in hospital

    Great Ormond Street hospital on children in hospital
     

     

     

     

    Follow Us

    Amelia in Hospital

    twitter

    Amelia in Hospital

    linkedin