While you are preparing and planning for your child’s surgery, you formed an idea of what their recovery would be like. This idea was based on information you got from your physicians, other parents, or the internet.

At a time when so much is out of your control, it’s very easy to become very attached to what you anticipate will happen during recovery or how fast it will happen. But it is impossible to predict events in the ICU.

The ups and downs of being in the ICU are profound, and they can be as big a stressor for a parent as being a soldier in active combat. In fact, about one in three parents of children who have heart surgery experience post-traumatic stress disorder (PTSD).

You are a great comfort to your child in the ICU and you are a critical part of their recovery. But during this challenging time, it’s equally important to get the emotional support you need to cope with the stress and manage uncertainty as you support your child.

The ICU Experience for Parents

After surgery you want to see your child’s gaze, but they are sedated. You want to hold your child, feed them, give them love and comfort…but they are attached to many machines that are breathing for them, feeding them, and giving them medicine. So you hold their hand or their foot as a way to let them know you’re there.

Unfamiliar beeps and alarms may cause you to worry. You might hear about another child who is doing poorly, or even hear a sudden rush of a medical team to another child’s bedside.

The ICU can be a difficult and painful experience for parents. One natural way to cope with your feelings is to watch for signs of progress towards recovery in your child, or in your conversations with their care team. Each step towards recovery is a major accomplishment in healing that your child fought very hard for and your family should celebrate.

But unexpected things can happen in the ICU. Your child’s progress can reverse for a day. Maybe they develop an infection or a problem with another part of their body. You suddenly find yourself facing an added problem that your child now needs to recover from.

Even something small can feel momentous in the ICU – like expecting that your child’s IV will be taken out only to find out that the team wants it to stay in a few more days.

Any event, new development, or setback – big or small – can be overwhelming for parents and result in you feeling anxious, depressed, or possibly enraged.

How to Manage in the ICU

The ICU can be a very strange and stressful place. These key strategies can help parents find their way through the experience.

  • Keep in mind that your child’s time in the ICU is temporary. You may have setbacks but your child will leave the hospital.

  • Remember that understanding the situation well is always a source (however small) of empowerment for you. Talk to your child’s bedside nurse or any member of their care team if you need more explanation about what is happening.

  • Ask for help if you are experiencing difficulty dealing with the situation – even if you are mad or upset. Tell the care team and ask about support resources.

  • Talking about your concerns or your difficulties is always the first step towards relief.

  • With some relief comes some calm. The calmer you are, the better it is for your child. They need your love and reassurance during this time, as well as your advocacy and support.

What to Expect and Do in the ICU

  • You have to wait to see your child

    A nurse or physician must invite you into the ICU before you can go to your child’s bedside. That’s because the transition from the operating room to the ICU requires focus to ensure your child’s wellbeing. Waiting may be difficult after you’ve already been patient through a long surgery. It’s important to respect the process and recognize that the care team is working in the best interests of your child.

  • Your child will look like they just had surgery

    It can be startling when you see your child after surgery. They will be sedated or sleepy and covered only with a small sheet or diaper. Your child will have many tubes and lines connected to their body. The nurses can tell you about the equipment that helps keep a close watch on your child’s condition.

  • Learn about the equipment

    One set of wires attaches your child to a monitor that constantly reads and records “vital” signs like heartbeat, breathing measurements, and blood pressure. Your child will also likely be connected to a Ventilator, a machine that helps them breathe. They will likely have several tubes to deliver and remove fluids. This includes intravenous (IV) lines to provide fluids and medications, chest tubes to drain extra fluids after surgery, and a catheter to measure urine output.

  • Have confidence in the care team

    Your child’s care team has significant experience and is prepared to treat any emergency. There may be times when alarms are sounding and large groups of people need to tend to your child. The team will ask you to leave so they can focus on your child’s urgent medical issues. After your child is stabilized, you can talk with the care team about what happened.

Basic Things to Know About the ICU Care Team

  • Who they are

    Your child will have a host of medical professionals in the ICU who are familiar with your child’s history and hospital stay to date. The ICU team are the ultimate decision makers when it comes to the care your child receives in the unit, but they will always partner with the surgical team, along with other cardiologists and specialists as needed.

  • How to communicate with them

    As a parent, you are encouraged to talk with the care team. This includes nurses, nurse practitioners, physicians, and anyone else who is caring for your child. Be sure to tell them any relevant information about your child’s health or offer updates about your child’s condition. You should also feel empowered to speak on your child’s behalf if you have any questions or concerns. Your role is to protect and advocate for your child.

  • The members constantly change

    The teams in the ICU are large and team members can change. Although the rotations in nursing staff and care providers can be difficult for parents, team members go to great lengths to communicate with one another. The exchange of information also happens between nurses during “shift change” when they explain to the new nurse details of your child’s care during the last shift, including relaying the plan and any relevant tests or milestones set for the day. Do share relevant information about your child with new team members.

  • There are daily “rounds”

    In every ICU there are daily “rounds” – usually in the morning – where your care team reviews your child’s course to date, overnight developments, and changes in their condition. After reviewing all of that information they develop a care plan for the day. You are welcome to join those discussions and ask whatever questions you have. You know your child better than anyone and your perspective is valuable.

Find a Point Person on the Care Team

The medical team managing your child’s care in the hospital is your “inpatient” team. They are the best people to make decisions in your child’s day-to-day management – like adjusting a medication or deciding when to move off the breathing machine.

Even though the inpatient team is the most informed about your child’s current condition, the team members change frequently. Because they don’t have a long-term view of your child’s progress and trends in recovery, they are not ideal for making decisions about your child’s long-term care.

If your child requires a long stay in the ICU, it’s a good idea to identify a care team member that you ask for regular updates about big picture issues, rather than day-to-day issues. The point person can be a source of continuity during the ups and downs in the ICU.

The point person may be your child’s main (or primary) cardiologist. This may be a pediatric cardiologist who cared for your child prenatally or outside the hospital before surgery, who has talked with you and knows you. Ideally this physician will manage your child’s cardiac care after they are home.

Usually the inpatient team talks to the primary cardiologist about once a week or if your child has a significant change in condition. A physician who follows your child’s progress long-term sees trends in your child’s recovery, and knows what your goals are for your child. While they are not in a position to make decisions about daily care in the ICU, it is important to have a physician who can provide this overview type of management.

The “Ups and Downs” in the ICU

I didn’t realize how normal it was in the ICU for your child to be doing really wonderful for a day and then the next day, just to think that the world ended.

Katherine, CHD Parent

PARENT TIPSocial Workers Can Help

If you don’t know who could be your point person or temporary primary cardiologist, ask your social worker to help you choose a medical professional that you feel connected to and comfortable talking with. The social worker can also help arrange your meetings with the point person.

FAQs

See more ICU FAQs in What Happens in the Intensive Care Unit

In some cases, a child’s chest is left open after surgery to leave room for any swelling and the space between the chest is covered by a plastic patch. If this is needed, the wall of the chest is typically closed within five to seven days after surgery.

Sometimes children are in the ICU even if they don’t require as much medical support as they did immediately after surgery. This happens when the medical team anticipates their condition could change quickly, and the ICU is the best place to monitor and respond to any changes in the child’s condition.

Feedback