TENDING TO A CHILD IN THE HOSPITAL:
EMERGENCY OR UNEXPECTED CARE
If your child is admitted due to complications
from cardiomyopathy, he/she may be in the intensive care
unit (ICU). Specially trained doctors, dedicated nurses and
technicians will tend to your child around the clock. Your
child's blood pressure, heart rate, and respiratory rate
will also be monitored continuously for any abnormalities.
When you see your child, you may find him/her sedated or
very drowsy with various equipment and tubes hooked to him/her.
Some of the special equipment may include a breathing machine
(ventilators), chest tubes to drain blood or fluid from the
chest after an operation, and several intravenous lines to
give blood, fluid and medications.
Once your child's condition stabilizes, he/she will be moved to the pediatric
care unit. Your child's doctor will advise you on whether your child requires
more specialized treatment at another medical center. Depending on your child's
condition, certain criteria such as the availability of transplantation, ECMO,
cardiac surgical support, pediatric ICU, neuromuscular specialists, geneticists,
or physicians who specialize in pediatric cardiomyopathy will determine whether
a medical center can provide the full range of needed services.
Comforting Your Child
Due to the circumstances that your child
was admitted to the hospital, your child may or may not realize
what is going on. He/She may be disoriented or scared. You
can make your child feel more at ease with familiar objects
(i.e. blankets, toys, books, music) that you bring from home.
At some point, you will need to explain what has happened
and what to expect in terms of medical procedures and treatment.
The guidelines for when and what to tell your child are the
same as described in the Preparations Before a Scheduled Procedure section.
When your child is in intensive care (ICU), your primary job is to make your
child as comfortable as possible. During the day, ask the nurse whether you
can hold your child even though he/she may be attached to tubes. Continue to
talk and touch your child so that they are aware of your presence. When it
comes to staying overnight with your child most ICU nurses will advise anxious
parents to get a good night's sleep at home. It is better to take advantage
of the ICU's constant care and save your energy for the pediatric ward where
there will be fewer nurses attending to your child. Also, if your child is
sedated or on a ventilator, there is very little that you can do for them during
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