ADULTS AND PARENTS
Hospital Admission

Ward 4 - Children's Cardiac Intensive Care
Information for Parents & Families

Leeds Teaching Hospitals NHS Trust  - Telephone: 0113 392 7104

Contents
Beliefs and Values
Introduction and Welcome to Ward 4 (CCICU)
Your Stay
Visiting
Your Role in the Unit
Your Child on CCICU
The Daily Routine
Equipment
Meeting the Team
Leaving Intensive Care
General Information
Helpful Organisations

Beliefs and Values of the Children’s Cardiac Unit Ward 4, Ward 10, Cardiac Outpatient and the Cardiac Liaison Nurse Service.
The nursing staff of the children’s cardiac unit:

• Value and respect each child and young person as a unique and developing individual whose interests must be paramount.
• Recognise that care is shared with the family and by offering support; guidance and teaching enable the family to participate in that care.
• Listen to children and respect their opinions, feelings and right to privacy.
• Respect the right of children, according to their age and understanding, to appropriate information and informed participation in decisions about their care.
• Consider the physical, psychological, social, cultural and spiritual needs of children and their families.
• Use the named nurse concept and promote continuity of care between the children’s cardiac unit, general paediatric areas and the primary health care teams in the community.
• Encourage individual development that ensures our educated and skilled staff promote evidence based practice and acknowledge the special needs of children and their families in hospital
• Value and respect the contribution to the care of the  child and family made by all the members of the interdisciplinary team.

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Introduction
Welcome to Ward 4, the Children’s Cardiac Intensive Care Unit (CCICU) at Leeds General Infirmary.  Having a child in intensive care can be very stressful and worrying time for you as parents. The aim of this booklet is to explain how the unit works and some of the language used.  The information in this booklet is designed to help you during your stay.  It has practical advice about what to expect and we hope it will help you feel less anxious when visiting your child.

Ward 4 has up to 7 beds consisting of two cubicles and a big 5 bed area.  A sitting room is provided for parents, which has a payphone, television and drink making facilities. There is also a visitor’s toilet. Your nurse will be happy to show you these facilities.

Most children are admitted to the unit from theatre after being on the children’s ward.  However, some are admitted directly from another hospital.  All of these children are nursed on the unit because they are very poorly and need specialised nursing and medical care.

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Your Stay
Whilst your child is in intensive care he/she will have one nurse allocated to care for him/her at any one time.  This nurse will inform you of your child’s progress and answer your questions.  Please feel free to ask her or any other nurse about anything that is worrying you, however, remember that her priority is to your child and there may be times when she is not immediately available to answer questions.  The safe recovery of your child involves concentration and watching as well as carrying out cares.

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Visiting
You may visit your child at any time.  The ward round occurs between 08.00-08.45, due to reasons of confidentiality we ask you not to be present at this time.  You will have opportunity to discuss your child’s care with a doctor later in the day.
Whilst close family are welcome to visit, we would stress that children on intensive care require periods of rest in order to aid their recovery and due to the high risk of infection it is not advisable to have lots of people in and out of the unit.  We have a unit policy of two visitors for each child and because space is limited it may be necessary for any others to wait downstairs in the B floor café area.  This can be reviewed under special circumstances.
           
Brothers and sisters are encouraged to visit, as often the situation imagined by them is much more distressing than the reality of visiting their sick brother/sister on the intensive care unit.  You know your children best and if you feel it appropriate for your children to visit the nurse will support and help prepare them.  Please be aware that any children visiting must have parental supervision and are your responsibility whilst on the unit and in the hospital.

Before entering the unit please press the intercom button and wait. You will be advised to either come straight through to the unit or to wait in the parent’s room.  On entering the unit please hang up outdoor coats and wash your hands before touching your child and also before leaving the unit. To prevent cross infection, it is important that you do not wander into the bed spaces of other patients.  Ward 4 has a very open layout which enables us to observe the patients closely.  One drawback of this is that privacy is difficult to maintain and we ask you to consider the privacy and dignity of other children when you are visiting your own.  For the same reason the nurses are not able to give out information about other children.  It is very important that you have periods of rest.  It is often better for both parents and children if they have frequent short visits rather than one long visit.  We understand that this is not always possible.

There is no objection to using your own cameras and camcorders on the unit, but we do ask that the privacy of the other patients and their families is respected.

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Your Role on the Unit
Even though your child is very poorly we will encourage you to continue to care for him/her by becoming involved in such tasks as mouth and eye care and nappy changes.  You may initially be too upset or frightened to do this - don't worry, lots of people feel like this at first. 

The nurse caring for your child will help you and make sure you know what you can and cannot move.  If you would like to be involved in your child’s care please discuss this with the nurse caring for your child and we will do our best to plan such events as feeds and washes to fit in with you.  Even though your child may be heavily sedated and can not respond to you, it is very important to hold your child's hand and talk to him/her as he/she may be able to hear you. 

Holding hands and gentle touch is good for both you and your child but sick children need complete rest and quiet so trying to wake or stimulate them before they are ready is inadvisable. Sometimes just to sit quietly without touching your child may be in his/her best interests.  The nurse looking after your child will advise you.       

We would appreciate if you could provide toiletries for your child i.e. toothbrush/paste, flannel, hairbrush/comb.  We also ask that you supply your own nappies for babies.  If your child has long hair, a scrunchie with no metallic pieces will be useful to tie hair back before their operation.  Children often prefer to wear their own clothes.  You may want to bring in socks and pyjama bottoms for older children or socks and bootees for a baby.  Once your child is getting better he/she may be dressed and will need light clothes to wear.  Please ask the nurse looking after your child for advice.  If your child has a favorite toy, cuddly blanket or comforter, please bring it in (it is a good idea to make sure these items are newly laundered and clean because your child is at greater risk of infection after his/her operation).  You may also like to bring in cassette tapes, videos or books for your child and photos from home.

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Your Child on CICCU
Following surgery your child will be brought back to the unit on a bed or baby warmer depending on his/her age.  Your child will be attached to a ventilator and monitor. 

Intravenous infusions will be set up and an X-ray of the chest will be taken.  All this takes 15-30 minutes. You will be informed of your child's arrival onto the unit and also when you will be able to come and visit.

The surgeon will usually come to see you at this time but if he is busy with other cases you will be seen at the earliest opportunity and the operative procedure that has been carried out will be explained.

Sometimes, because parents are so anxious, they do not take in all that is said to them at this stage so if there is anything you have not understood, do ask either the nurse caring for your child or ask to see the doctor.  We know that whatever we say you will worry, but we try to lessen your anxiety and keep you fully informed of your child’s condition and any changes in their care.

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Daily Routine
The day starts with a handover of information from the night nursing staff to the day staff.  At 8:00 – 8:45am the major doctors round takes place (remember no visiting at this time please).  Each child is carefully assessed and medical care for the day is planned.  Your child may have a chest X-ray.  A physiotherapist, dietician and pharmacist may visit them.  At tea time there is another doctors round to check on progress during the day.  Throughout the day children are admitted to the unit and discharged to the ward & doctors visit regularly.  At weekends the unit is often quieter as there is no operating unless there is an emergency.

Common Equipment on CCICU
Your child may need many types of equipment to enable the doctors and nursing staff to monitor your child very closely and to administer prescribed medications.  The following list aims to introduce you to most of the equipment used.  The nurse caring for your child, will be very happy to explain the need for and function of any equipment in use.

Arterial Line
This is a special line going into an artery. This is connected to the monitor and measures the blood pressure. It can also be used by the nurses to take blood samples.

Chest Drain
These are drainage tubes, which come out of the chest and are connected to containers under the bed. These drain excess blood from the operation site and allow for the lungs to re-expand fully.

Drugs and Medicines
Your child will be given many drugs. These include strong painkillers and antibiotics. Some drugs are used to support the heart during recovery.

Endotracheal  Tube  
This breathing tube goes from the nose (or sometimes the mouth) into the lungs. It is attached to the ventilator. The tube passes through the vocal cords so your child won't be able to cry or speak. The tube is taped in securely to prevent it from becoming dislodged. To prevent this tube from becoming blocked a thin tube is used to suck up secretions. This is called suctioning. This may make your child cough.  Some parents find this upsetting.

Monitor      
Each space has a main monitor (television screen) to measure heart rate, blood pressure and other things. All of the equipment has alarms.  These are very sensitive and sometimes go off when nothing serious is wrong. The nurse looking after your child will check if an alarm goes off.

Intravenous Lines
Your child will have 1 or 2 intravenous lines in their neck/leg to enable us to give drugs and fluids. These lines may be attached to syringe pumps or infusion pumps, which allow the exact amount of fluid to be infused.

Nasogastric Tube
This tube goes from the nose into the stomach. This allows us to aspirate his/hers natural gastric juices and air so that he/she does not vomit.  Later the same tube may be used for feeding purposes.

Oxygen Saturation
 This is attached to a finger or toe to measure the oxygen in the blood.

Pacing Wires
These thin wires come out through the chest to be attached to a pacemaker box. These can be used to make the heart beat faster. The pacemaker is not always used.

Peritoneal Dialysis Catheter   
This is another drainage tube which may be used to support your child's kidneys if they do not work adequately.

Temperature probes
There will be a small probe inserted into your child's bottom or nose to measure central temperature and another probe attached to the foot to measure skin temperature. This gives an indication of how well the heart is functioning.

Urinary Catheter 
This tube goes into the bladder. We measure the amount of urine hourly. This gives us an indication of how well the kidneys are functioning and whether the heart is pumping enough blood to allow this.

Ventilator
This machine takes over your child's breathing until they are able to breathe for themselves. Your child will not be able to eat or drink whilst attached to the ventilator; however we will provide nutrition via different routes such as a drip or nasogastric tube.

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Meeting the Team
There are many people who will be involved in your child’s care. This list is an introduction to the different groups.

Cardiologists          
This team of doctors takes care of the medical aspects of your child’s care before and after theatre.

Chaplain
There are representatives of the main religions visiting the hospital. If you wish to see one of them, just ask the nurse looking after your child and she will arrange it. If you want your child to be christened whilst in hospital, we can arrange this too.

Children’s Cardiac Nurse Specialists      
They are the link between home and hospital. The Nurse specialists visit the unit regularly.

Dietician                         
The dietician will assess your child and ensure the he / she receives adequate nutrition and calories to help them recover from their surgery.

Intensivists             
This team of doctors provide hour by hour management of the children and co-ordinate care.

Nurses
Whilst your child is in intensive care he / she will have one nurse allocated to care for them at any one time. At times there will be student nurses working with them, to learn about intensive care.

Pharmacist              
The pharmacist will check the medicines your child is receiving each day.

Physiotherapists   
The physiotherapists care for your child’s chest. They help children to cough and clear secretions from their lings. This may involve different techniques that the physiotherapist will explain. Physiotherapists may also help to position your child to ensure that they are comfortable. They will visit as often as necessary.

Social Worker
A social worker is available if you need help with travel expenses or other benefits. She will liaise with your own social worker if you have one. Please ask the nursing staff if you would like to see one.

Surgeons                
This team of doctors performs the operation and will look after your child on the unit.

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Leaving Intensive Care
Once your child’s condition is stable and he/she is breathing unaided, your child will be transferred to either the high dependency unit or ward area on the cardiology ward (ward 10) on 'E' Floor.
This is often a stressful time for parents because in the intensive care unit he/she will have a nurse all to him / herself and on the ward will have to share a nurse with other patients.  Unless your child is well enough, he/she will not be moved, so try not to worry!

General Information

Accommodation is available for parents to stay nearby and can be arranged through the nursing staff.  There are a limited number of rooms so please vacate your room if not using it.  Laundry and kitchen facilities are provided.

Car parking spaces within and around the hospital are limited. Whilst your child is on the unit you may have a parking permit. Please ask the nurse caring for your child to arrange this.

A cash dispenser is available is available in the main foyer of the Jubilee building.

Chapel / Quiet Room / Prayer Rooms: The chapel is open 24 hours a day. Please ask a nurse to direct you. There are also quiet rooms / prayer rooms available for use with Koran, Bible and prayer mats. These are situated on E floor next to Ward 10 and on G floor next to Ward 23 / 24.

Equal Access: if you have hearing problems or are visually impaired please let us know so that we can assist you in visiting your child and communicating with staff.

Language: if English is not your first language we can arrange for an interpreter to come to the unit.

Mobile phones: these must be switched off before entering the unit as they may interfere with the monitoring equipment.

Restaurants
There are two main restaurants and several shops, in the main foyer of Jubilee Building, from which to buy food.

Clarendon Wing Restaurant (C Floor, Clarendon Wing).  Turn right out of the unit and follow the corridor through to Clarendon Wing.  The restaurant is on the right opposite the Peter Congdon Neonatal Unit.

QB’s Dining Room (Brotherton Wing).
Opening times for both restaurants are:

Breakfast  07.30am – 10.45am
Lunch  11.45am – 1.45pm
Evening 5.00pm – 7.30pm

Night Service 10.00pm–02.00am (Clarendon Wing dining room only).  Please note Clarendon and QB’s dining rooms are closed 4.00pm – 5.00pm Monday to Friday and 2.30pm – 5.00pm weekends.
Nursing staff on the unit will be able to issue a docket entitling you to a staff discount on some meals purchased in the restaurants.

In the entrance to the Jubilee building there is a sandwich shop called The Upper Crust', which is open from Monday to Friday 8.00am-10.00pm, Saturday to Sunday 10.00am - 5.00pm.  They sell freshly made baguettes, coffee and pastries.  Seating is provided. There is a selection of nice sandwich shops in Great George Street near the Hospital.

There are many Shops and eating places/pubs in the city centre, about 10 minutes walk from the hospital. Maps are available; please ask a nurse if you require one.
Transport: The train station is situated in Leeds City Square about 10 minutes walk from the hospital. For train times Tel: 0345 484950.  Buses from Leeds central Bus Station at Eastgate run at regular intervals throughout the day.  For bus times Tel: 0113 245 7676.

Smoking: the trust operates a no smoking policy, therefore smoking is not allowed anywhere within the hospital.  There are designated areas outside the Jubilee front entrance.

Telephones
You can telephone the unit at any time. The direct telephone line to the unit is 0113 392 7104.

As we can only give very limited information to other callers, it is better for their enquiries to be directed through you. If you are resident your room will have a telephone which will take incoming calls. Ask a member of the nursing team to give you the number of the phone in the room.

We are constantly evaluating the service we provide. We would appreciate your comments about how we can improve your stay with us and particularly about this booklet. Please write them on a piece of paper and post it in the suggestion box in the parent’s room. You can make comments anonymously

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Helpful Organisations
Action for Sick Children

The Association for Children with Heart Disorders
Tel 01706 213632

Association for the Welfare of Children in Hospital
01805 424 848

Children’s Heart Foundation
Help and support for heart children and their families.
0808 808 5000

Down’s Heart Group
01525 220379

GUCH – Grown up Congenital Heart Group
A support group for teenagers and young adults.
0800 854 759

Heartline Association
01276 707 636

Parent line
Confidential and anonymous help line for parents under stress.
01703 833 555

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Authors
Andrea Duckworth (Staff Nurse)
Paula Law (Staff Nurse)

December 2004
Review date: December 2006

Web Updated Winter 08/09