What to Expect After Discharge
Being discharged from the hospital is an important and exciting step in your child’s recovery after his/her PICU stay, but it can also be a stressful time for many families. You may feel anxious about taking care of your child without assistance. You may feel worried that they are going to get sick again. These feelings are normal. The information below is meant to help you understand changes you might see in your child after his/her PICU stay. Keep in mind that every child is different, and your child may experience any one or more of the problems described below.
Physical function & special equipment
Weakness
Many children feel weak after a stay in the PICU because they’ve been sick and haven’t been moving around much while in the hospital. Your child may tell you they don’t feel as strong as they were before, or they might have trouble doing certain activities. Muscle strength often returns gradually over a number of months. Encouraging your child to move and be as active as possible may help them regain strength. Talk to your child’s healthcare provider about whether physical or occupational therapy would be helpful for your child.
Breathing & Speaking
Children recovering from lung infections or children who were intubated (on a breathing machine) during their PICU stay may experience hoarseness (scratchy or quiet voice). Some children may be more likely to experience another lung infection. Some children may require oxygen or a breathing device (tracheostomy, BiPAP, ventilator) even when they go home. Talk to your child’s healthcare provider about what changes to expect for your child over time.
Feeding
Some children require help with nutrition after they go home. Your child may require additional calories or tube feedings (NG or gastrostomy tube). Talk to your child’s dietician or nutritionist to learn more about what your child may need.
Medications
Some children will require medications once they go home. Some of these medications may be taken by mouth, and some must be administered intravenously (directly into the vein). If your child requires intravenous medications, your healthcare provider will talk to you about a special “IV” (PICC or central line).
Other Changes
Other physical changes children might experience after a stay in the PICU include residual pain, numbness, and tiredness/fatigue. If you are concerned about any changes you see in your child or your child does not seem to be improving, reach out to your child’s healthcare provider. Talk to your child’s pediatrician about your child qualifies for an individualized education plan (IEP) or a 504 plan.
learning
Many children experience difficulties with thinking after a critical illness. Often children have trouble paying attention, can’t think as quickly as they used to, or have trouble remembering things. These difficulties usually improve, but it may take several months for your child to feel back to normal. As your child returns to school, these challenges may impact their ability to concentrate on schoolwork. Talk to your child’s teacher and let them know your child’s brain is still recovering. Consider sharing this website with them if they want more information. Your child’teachers may be able to provide your child with extra support such as extended test time or shorter tasks with breaks during class time.
Emotions
Being in the PICU is a scary and stressful experience for children. Some children continue to experience the effects of this stress after they come home. Many children may experience one or more of the following symptoms:
- not wanting to think or talk about their time in the PICU
- unpleasant memories or flashbacks of their time in the PICU
- difficulty sleeping and nightmares
- increased anger or irritability
- being easily scared or startled
These symptoms should lessen over time, but may last for up to a year after leaving the PICU. Encourage your child to talk about how they are feeling. Consider reaching out to your child’s pediatrician, a school counselor, or your PICU care team, especially if these symptoms don’t seem to be getting better over time.
BEHAVIOR
Children can show a wide variety of behavior changes after a stay in the PICU. Some children experience loneliness or separation anxiety, often related to the emotional changes described above. Others may have difficulty concentrating or staying still. Some children may throw tantrums or lash out at parents or siblings. Others may start acting younger. Recognize that these behaviors are related to the stress of the PICU stay and should improve over time. Consider talking with a school counselor or your child’s pediatrician if you are concerned about behavior changes in your child.
Sleep
Sleep is a common problem for children after a PICU stay. Many children have trouble falling asleep or don’t want to sleep alone. Children often complain of bad dreams, which may or may not be about their time in the PICU. It may be helpful to stay with your child a little longer than usual as they fall asleep. Try to maintain normal routines and bedtimes as much as possible, while also making sure your child feels safe and comforted as they fall asleep.
family functioning
Parental Stress
Having a child in the PICU is a stressful experience for parents and families as well as children. Parents may experience symptoms of Post-Traumatic Stress Disorder (PTSD). These symptoms may include avoidance of thinking about your family’s time in the PICU, troubling and intrusive flashbacks to your child’s PICU stay, anxiety, sadness, and stress.
One of the best things you can do as a parent to help your child is to take care of yourself. Some parents find it helpful to think about their time in the PICU, and even write down what they remember and how they are feeling. Give yourself permission to cry or feel upset. Try to find time to do things you enjoy. If you are feeling stressed, overwhelmed, or experiencing any of the symptoms described above, reach out to a close friend, family member, or healthcare provider for support.
Siblings
The impact of a PICU stay may affect the whole family, including other children. Even after their sibling comes home, siblings might be sad or worried, and may also experience stress related to the PICU experience. Encourage siblings to talk about how they are feeling, and reach out to a school counselor or the child’s pediatrician if they need extra support.
How to help your child
As much as possible, follow your normal routines
Encourage your child to talk about how they’re feeling
Maintain normal boundaries, including rewards and consequences
Take care of yourself
Attend all follow up appointments
If your child or anyone in your family is struggling or needs extra support, talk to your healthcare provider
