Navigating Transitions Through Medical Care for Your Child

How do I make sense of these unfamiliar situations?

Navigating the transitions between the initial cardiac arrest, hospitalizations, surgeries, treatments, rehabilitation, and home care can be very stressful. Below, we will discuss the various possible transition stages and resources, as well as provide insights from people with lived experiences to help you navigate this difficult time. 

As a co-survivor parent, it is normal to find yourself navigating many unfamiliar stages as your child journeys through their recovery. You may find yourself in disbelief and unclear on what to do. This may have started from the moment you got the first phone call or witnessed the cardiac arrest itself. It may last all the way through your child’s stay in an intensive care unit and the hospital. Next, you may find yourself waiting to better understand the cause of the cardiac arrest and how the days and nights ahead of you will look. You may ask yourself how you can navigate the healthcare system that is working hard to ensure the best outcome for your child. You may be overwhelmed, sleep-deprived, trying to make sense of everything, and frequently saying to yourself, “Help me, I can’t do this alone!” You may start to feel like you cannot make any decisions anymore. You are tired. 

The journey could be very long. The emotional turmoil will stay with you for a long time and may outlast your child’s recovery journey. This is normal. It is the acute stress and trauma resulting from cardiac arrest. Sometimes, others expect you to pull it together as your child recovers. However, you should have the freedom to express your real emotions and process them in the way you need. If you need to give yourself some space from those that have unreasonable expectations of you, that is okay. Remember, things will not be back to normal. You will eventually arrive at a new normal.

The initial phone call – a state of shock and disbelief

You may witness your child dying in front of you or receive a very unexpected phone call that your child is on life support. You may have just spoken to or seen them. You try to get information from this stranger – a first responder or hospital care team member who cannot tell you for sure what is wrong. Some may feel overcome by doom and dread, wondering if they will ever see their child again. Others might react to bad news with numbness, staying calm, and thinking about the tasks and actions that need to be taken. Both reactions can be a normal reaction to the pain of this trauma.

Co-survivor insight: “I am the one that holds things together at home and cares for my family members. I was in so much shock that I couldn’t think clearly. I tried to use the phone to contact someone who can help but couldn’t remember the number or use keys to lock the door. I was shaking and couldn’t get my emotions to calm down. I was frozen and couldn’t figure out how to get myself to the hospital.”

Intensive care units (ICU)

You arrive at the hospital and proceed to the ICU to see your child. You may find it very frightening to see all the equipment hooked up to your child. You may have many questions and feel eager to hear that your child will be fine.

Co-survivor insight: “I dropped to my knees upon entry into the room in shock of seeing him on life support. I was crying and couldn’t catch my breath wondering, “What is this I’m seeing? How do I get answers? Who should I tell that he is in this state?” I wanted answers and was confused about who [could] help get those for me. Where do I begin?”

This situation is hard to manage alone. Make sure you reach out to your partner, another family member, or another support person. If you do not have support people that can be present with you, social workers in the hospital and the medical team can help you with this burden. You do not have to do this by yourself.

Understanding care team roles as you navigate the hospital

It is important for you to understand the roles of those involved in caring for your child. This may be too much to take on alone. Here is a list of some people who can serve as resources for you. 

For medical information:

• • Medical Team: Your child’s medical care team will include ICU providers (doctors, nurse practitioners, physician assistants, nurses) and other specialists. Some common specialists include cardiologists (heart doctors), neurologists (brain doctors), and pulmonologists (lung doctors). Your child will have many nurses caring for them during their time in the ICU. They may be responsible for one patient or multiple patients at a time.

For logistical support:

• • Child Life Specialist: It is hard to be in the hospital for anyone, but especially a child. A certified child life specialist is a professional who is specially trained to support children in the hospital. They can help your child to adjust and understand what happened to them. They can also help support your child’s siblings, cousins, or friends.  
  • Charge Nurse and/or Nurse Manager: Every ICU has a charge nurse and/or nurse manager to make sure you have everything you need. This is the first person you would reach out to in case of any concerns with your child’s care.  
  • Hospital case manager: A hospital case manager assists in the discharge process and timeline in collaboration with the medical care team. One of the case manager’s key roles is to assess the patient’s health insurance plan and work with the insurance company and multiple providers to ensure that the best care is delivered with the least financial burden. If you need to transfer your child to another hospital for advanced care, the case manager helps transfer documents and ensure optimal sign-out.
  • Hospital social worker: Social workers are uniquely qualified to assess and address many complex circumstances and can clarify potential misperceptions, enhance communication between you and your other family members, and convey your needs to the medical care team. This not only helps improve the quality of life for you and your child but may also reduce the likelihood of decisional conflicts. Social workers conduct psychosocial assessments to identify mental or emotional distress, counsel those in crisis or experiencing distress, and help connect patients and their families with necessary resources.

Other support for you:

• • Chaplains: A hospital chaplain offers spiritual guidance and pastoral care to patients and their families. As representatives of religious traditions, chaplains in hospitals and medical centers use the insights and principles of psychology, religion, spirituality, and theology. You can ask to see a chaplain at any time. In some hospitals, they may even be a part of your initial support when your child is admitted. 
  • Chapels: Non-denominational chapels are standard in most hospitals. The chapels are a place where you can have quiet meditation. Some religious services may be held in chapels as well.
  • Family and friends: Communicate openly about your needs as you journey through this process. Your family and friends can be a strong support system for you by arranging meals, providing group updates, and relieving you at the bedside, so you can get some sleep, wash up, etc. You may find yourself unable to leave your child’s side, yet rest will be more helpful for both you and your child.

You can also play an important role in your child’s care:

• • If your child recovers and medical equipment and medicines are removed, you may notice some behavioral changes. Your child may be more agitated and confused. If your child is too young to speak, your child may cry and fuss. If your child is old enough to speak, your child may repeat the same questions or make less sense when speaking. Your child may also lose developmental skills that your child had before the cardiac arrest. You know your child best. You can tell your medical team things that help your child to be comforted or calmed. It can also help to gently explain things to your child. Keep it simple, and do not expect much at first. 

Step-down units or the general pediatric floor

If your child is medically more stable, your child may be moved to a step-down unit or the general pediatric floor, depending on the hospital setting. This is for patients that require less critical care than an ICU and may have less nurses. You may have concerns such as:

• • Is this too soon? 
  • My child is not being monitored as often. What if an important change is missed? 
  • My child is acting differently. Will it change? Can I help my child? My child’s memory, speaking, facial expressions and movements have changed. 
  • Where do we go from here? 
  • What is the diagnosis and treatment plan?

Please know that these are normal worries to have when your child moves out of the ICU. Feel free to talk with your child’s medical team if you have these (or any other) questions about their transition. 

New situations may also arise:

• • You may learn that various procedures are needed to help your child. This could include swallowing studies and neurological tests among other tests. They can be frightening and difficult to understand.  
  • Infections and other complications can arise from needing medical devices, like a breathing tube or central line, which can be treated.  
  • You may find they need to transfer your child to a different hospital with advanced care for further treatments. This is normal and will help your child in your child’s journey to recovery.

During this time, be sure to access your resources and repeatedly revisit and re-communicate your needs. Take time for rest and self-care through activities such as meditation, calming music, deep breathing, and therapy. Give yourself permission to feel this way without judging yourself.

Transitioning to rehabilitation

There are a variety of rehabilitation options. These forms of therapy usually start in the hospital and then continue at home as an outpatient, in a physical rehabilitation facility, or in long-term care. Rehabilitation is an important component of the overall successful recovery of you and your child. Understanding the role of each type of therapy is helpful in knowing what to expect going forward: 

• • Physical therapy: Focuses on improving children’s ability to move their bodies.  
  • Occupational therapy: Focuses on improving children’s ability to perform developmental skills like feeding themselves, coloring, or cleaning themselves. 
  • Speech therapy: Focuses on children’s speech-language, voice, and ability to swallow. 
  • Cognitive therapy: Focuses on children’s cognitive function, such as attention, memory, reasoning, problem solving, and executive function.

Recovering at home

Bringing your child home can be scary. That is a normal feeling to have. You may feel insecure about providing care in the best possible way and afraid that this could happen again or that your child could die. You may find yourself unable to sleep, unable to leave your child’s side, and checking on your child constantly to make sure your child is okay. Ask for help from other close family members or friends to watch your child, so you can rest, take a shower, go for walks, etc. If you are eligible for home health care services, you could use their support for your child’s care needs.   

Remember that you will also be receiving phone calls from home care agencies, home health equipment providers (if needed), pharmacists, doctors, insurance companies, etc. This can be incredibly challenging keeping in mind that you are also recovering from the stress and trauma caused by your child’s event. Communicate your need for help to your family and friends. It can be too much to take on by yourself. It is normal to need and want help. 

General tips to organize yourself:

• • Make a list of all the contact numbers and who to call for what (doctors’ offices, home health equipment companies, pharmacies). This information should be included in your discharge instructions too. You can take a picture of this list or make a note on your phone. 
  • Keep a notebook documenting medical team notes, updates, prescriptions, care plans, etc. This will be a helpful resource during the initial journey and beyond.  
  • It is quite common to misunderstand what is being said during family discussions with the medical care team. It can be confusing. See if you could have at least two members of your support system present (one taking notes and the other listening and responding). It will lead to better understanding.

Thank you to our contributors

Annie Gula, Debbie Medina, & Cindy Marchionda