Introduction
A health care team that is expert in the care of very sick children is here to take care of your child. The first sight of your child in the intensive care unit (ICU) can be upsetting and confusing. Your child may not recognize you and will be laying in bed, connected to machines with lines and tubes, and may be given medications to stay still. This is a difficult and stressful period for you and your family. You may find this pamphlet helpful in understanding what is happening in the ICU and what you may be able to do to help your child.

Why does my child look like that?
Each of the wires and tubes you see is there to help the doctors and nurses care for your child. Here are some of the wires and tubes that your child may have (their medical names are in parentheses):

HEAD
Brain: brain pressure monitor (ICP monitor), brain fluid drain (EVD)
Mouth: breathing tube (ET-tube, endotracheal tube), feeding tube (OG, OD, OJ)
Nose: feeding (NG, ND, NJ), breathing (nasotracheal tube), suction tubes
Face: oxygen mask, oxygen tubes in the nose (nasal cannula or nasal "prongs"), pressure mask (BiPAP)

CHEST
Sides: lung drain of fluid or air (chest tube, "pigtail" catheter)
Front: heart pressure monitors (RA, CVP, LA, PA lines), heart fluid drain (pericardial catheter), electrical wires to the heart (pacemaker wires)

ABDOMEN/GROIN
Side: feeding tube or "button" (Gtube, GJ-tube, J-tube)
Side: fluid drains (JP drain)
Groin: urine tube (Foley catheter)

BODY
Entire body: heart and breathing monitor wires (cardiorespiratory [CR] monitor)
Head, hands, arms, feet: fluids and medication tubes (IV)
Neck, collarbone, groin: deep IV (central line)
Arm, leg: blood pressure cuff (BP cuff)
Wrist side-arm, ankle, foot, groin: constant blood pressure monitor (aline)
Finger, toe, ear, nose, forehead: blood oxygen monitor (pulse ox, "sat" monitor)

You may see a nurse or technician draw small amounts of blood from your child either by using a needle (as a result, there may be some bruising that will heal over time) or from a central line or a-line. These blood samples provide important information that helps us keep a close watch on your child's condition. As your child improves, less blood will be taken and many of the wires and tubes will be removed.

Your child may appear to be asleep or may not move when you touch him or her. Some children may not move because of an overwhelming illness of the brain. Your doctor may have given your child one or more of the following medicines:

Sedative: to help your child relax, sleep, and not to remember what is happening
Analgesic: to decrease or eliminate pain
Muscle relaxants: to keep your child from moving

You should continue to touch, caress, speak, sing, and read to your child when he or she is sedated and appears to be asleep. It is often comforting and reassuring for your child. Occasionally, the nurses or doctors may ask you not to stimulate your child if this leads to high brain pressure.

What medical problems may happen to children in the ICU?
Often, children are admitted to the ICU because of a single problem, such as a severe case of pneumonia or an injury to the head. However, the function of other organs in the body may be affected because of the body's response to your child's illness or injury. Here are some of the changes that may occur in your child:

Shock: low blood pressure, cool or flushed skin
Kidney injury: little to no urine production
Liver injury: yellow skin (jaundice), tremors, strange behaviors or unconsciousness (coma), or bleeding
Lung injury: not getting enough oxygen (O2) in or carbon dioxide (CO2) out, and may need a breathing tube (ET-tube and ventilator) to help your child breathe
Brain injury: swollen brain, which may cause your child to act strangely, to be unconscious (coma), or to have seizures.

What are all these machines hooked up to my child?
As a result of certain illnesses, your child may be connected to some of the various machines listed below to support his or her organs until he or she is sufficiently healed:

Kidney: dialysis (CVVH), to purify the blood and balance blood salts
Lungs: pressure mask (Bi-PAP), breathing machine (ventilator), lung bypass (VV-ECMO)
Heart, heart-lung: bypass (VAECMO, R-VAD, L-VAD)

Who are the people taking care of my child?
A healthcare team will be taking care of your child around the clock. This team includes any or all of the following:

Doctors: several teams of doctors may be caring for your child. An attending physician heads each team of physicians. These teams include an ICU doctor (pediatric intensivist) who is a specialist in treatment of critically ill children, a surgeon who may need to perform an operation for your child and works closely with the ICU doctor, and other specialists. In many ICUs there are also doctors in training. These include medical students, residents, and fellows. Each team will have an attending physician and may have many doctors in training who work closely with the attending physician in caring for you child.

Nurses: specially trained to closely monitor and provide clinical care for your child

Pharmacists: specialists who monitor your child's medications and dosages during the course of the illness

Dietitians: nutrition specialists who help manage your child's nutrition, including tube feedings or IV feedings

Respiratory therapists: specialists who help your child with breathing treatments, measure lung function, and provide oxygen and ventilator care

Physical therapists: specialists who help tone and strengthen weak muscles and loosen stiff joints that your child may develop during his or her ICU stay

Occupational therapists: specialists who access and teach your child to regain skills such as eating and dressing

Child-life specialists: specialists who help your child cope with being in the ICU. These experts in child development can also help prepare siblings for a visit to the ICU.

Social workers: specialists who support you and your family and who guide you to resources as needed during your child's stay in the ICU

Psychologists: specialists who provide counseling to you and your child during your child's illness

Chaplains: clergy who provide spiritual support to you and your child; usually nondenominational, but denominational upon request

Unit clerks: desk clerks who order tests, coordinate patient transfers, and keep the administrative aspects of the ICU running smoothly

Discharge planners: staff who help coordinate the transfer of your child to other hospitals or care facilities and arrange for equipment that you may need at home to help care for your child

Parents/Guardians: the most important member of the team is you

What can I do?
You know your child better than anyone else and can provide helpful observations about him or her. Here is what you can do:

Participate in the care of your child: When appropriate, wash, feed, or hold your child (always ask your child's nurse first if this is okay). Be aware of daily and long-term goals to help your child get better. Understand what the core goals are as well as the "big picture" in order for your child to leave the ICU. Recovery is a process that may be unpredictable and is based on your child's progress. Every child recovers differently even from similar illnesses.

Ask questions to stay informed: Feel free to ask questions as many times as you need. Your care providers realize that you are under a great deal of stress and may not remember everything the first time you hear it. Write down the names of your care team members and what their roles are. If you think of questions when the doctors are not around, ask your nurse or write them down to ask later.

Bring in pictures of your child or family. This helps your care team see your child the way you do and personalizes your child's care.

Bring in favorite toys, blankets, books, movies, and music. Familiar objects are comforting for children. Distraction with familiar toys and objects can help your child stay calm and recover more quickly.

Learn more about your child's illness: Your doctor or nurse can provide you with written material, websites, and can sit down and explain to you what is going on.

Mail: your child may enjoy receiving mail from family and friends. Your child's nurse can give you the address of the ICU.

How can I take care of myself?
The people taking care of your child all need to take breaks from the tiring and emotionally challenging work of caring for your child. You need to take breaks too. Here are some suggestions:

. Eat healthy 
. Get enough sleep
. Exercise or stretch your limbs periodically
. Accept the help and support of family and friends
. Keep a positive attitude
. Use faith and spiritual support and activities, such as meditation
. Keep a journal of thoughts, feelings, or your child's progress
. Read inspirational material
. Appoint a family member or close friend to take messages or to be a spokesperson for you
. Make sure someone looks after your house, pets, and checks your mail and phone messages

How will this affect my other children?
The illness or death of a sibling can affect other children in your family. Here are some things to look for:

. Children feel responsible for sibling's illness because they wished him or her ill in the pastt.
. Children feel ignored or that you are favoring the sick child by spending so much time at the hospital.
. Children act out or may regress (for example, loses bladder control).
. Children do poorly in school due to prolonged disruption in family life.

Often it is helpful to address these issues yourself or with the help of a specially trained psychologist or child-life therapist. Many families find family therapy helpful in resolving these issues. Take some time to be with the rest of your family and to restore balance to your own life.

End-of-Life Care
A child in the ICU will have every reasonable treatment during his or her critical illness. Occasionally, a child's illness is too overwhelming for current medical care to support the body, or there may be no cure available, in which case your child may not survive their illness.

Your doctors may approach you (or you may wish to approach your doctors or nurses) to discuss the discontinuation of mechanical treatments such as breathing or dialysis machines or to discontinue blood pressure medications that may only be prolonging your child's dying process. The doctor may discuss limiting some of these care options with you. Here are some basic terms to know:

CPR (Cardio-Pulmonary Resuscitation): Heart and breathing support using chest compressions, medications, and/or a breathing tube. Various combinations of these treatments are also possible.

Defibrillator: A machine that sends an electrical stimulus to "restart" the heart.

Brain Death: Irreversible death of the entire brain; breathing stops in the absence of a ventilator. The kidneys may not work properly. Some spinal reflexes may remain. This is death by legal and medical standards. A brain dead child may be eligible to become an organ donor.

Resources

www.sccm.org

ICU Issues & Answers from SCCM

  . Participating in Care: What Questions Should I ask?

  . Taking Care of Yourself While a Loved One is in the ICU

  . Why Do ICU Patients Look and Act That Way?

  . Common Problems of Critical Illness
  . What Are My Choices Regarding Life Support?
  . Helpful Hospital Safety Tips
  . Sepsis: What You Should Know
  . Making Decisions About ICU Care
  . Making Decisions When Your Child is Very Sick
www.icu-usa.com

www.cityofhope.org

National self-help clearinghouse

  (212) 642-2944

  www.selfhelpweb.org

  www.mayoclinic.com

Partnership for caring-America's voices for the dying

  1-800-989-9455

  www.partnershipforcaring.org

  www.dyingwell.org

Hospice link: 1-800-331-1620

© 2003 SCCM
Developed with an unrestricted educational grant from Eli Lilly and Company