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Aorta is reduced in
size (diameter)
Left ventricle
cavity is small
Mitral valve
closed or atretic
Notes:
Notes:
Your baby will spend several weeks in the PCICU after birth. The PCICU is a
14-bed intensive care unit (ICU) that specializes in treating infants and children
with heart problems. The PCICU medical team and staff are experts in caring
for children with heart defects.
When your child is medically stable and ready to leave the PCICU, he or
she will be moved to 8D. 8D is a specialty step-down unit for infants and
children with heart problems. 8D has 14 private rooms with showers and
in-room sleeping. Parents and caretakers are encouraged to stay and sleep
in the room with their baby on 8D. You will receive more details about 8D
once your baby is transferred there.
The PCICU is an open unit, which means family presence is welcome any time
of the day or night. There is a limit of 2 visitors at the bedside at any given time.
You will receive more details about family presence at the bedside and unit
guidelines when your baby arrives to the PCICU.
Medical Team
Your babys medical team will be large. The medical team will include many
doctors, nurses, therapists, dietitians, pharmacists and other staff members.
that trains and educates doctors, nurses, medical students and other health
medical knowledge and treatments, technology and patient care.
Your babys staff will change with each shift. There are two shifts per day. The
team will be written on a sign next to your babys bed. Please ask a staff member
if you are unsure who your babys medical team members are.
Physicians
experience and training.
Attending Physicians (MD or DO)
medical training. The attending physician supervises and leads the medical team.
Fellows (MD or DO)
Licensed medical doctors who have completed their general (e.g. pediatric)
The attending physicians supervise fellows. Pediatric cardiology fellows are
important members of the PCICU and 8D teams. There is always an on-call
pediatric cardiology fellow who sleeps in the hospital.
Nurses
There are many different roles of nurses.
Nurse Managers
Each unit has a nurse manager who is the supervisor. He or she oversees the
general operations, policies, and care environment for that unit. They are available
Medical Students
school as part of their early training to becoming a doctor. They do not have
Charge Nurses
designated shift. The charge nurse rotates with every shift.
Occupational Therapists
skills and sensory skills. They provide therapeutic support for daily activities
including eating by mouth.
Physical Therapists
Providers who evaluate and help children with movement, muscle strength,
gait, posture and walking, running, jumping and balance.
Radiology Technicians
tests as directed by the health care team.
Respiratory Therapists
Providers who take care of a childs airway, including ventilation,
tracheostomy care, suctioning and breathing treatments.
Social Workers
Professionals who help families cope with being in the hospital. They
provide help with family or social challenges. They can provide short term
For or
consultation
orMUSC
referral,Meduline
call MUSC
For consultation
referral, call
at Meduline
at 843-792-2200
or toll-free
at 1-800-922-5250.
843-876-CARD
(2273) or toll-free
at 1-800-922-5250.
What to Expect
Day of Delivery
Your babys delivery will be carefully planned.
On your delivery day, your medical team will include the following:
Obstetrician
Neonatologist
Neonatal nurse
Labor and delivery nurse
Respiratory therapist
Over the course of several days, your babys cardiac diagnosis will be
will be made.
Day of Surgery
The day before surgery, the surgeon will have a meeting with you to discuss
the operation, possible risks and complications, and to obtain your consent.
Your baby will go to the operating room very early on the day of surgery,
updates about the progress of surgery. You can expect your baby to be in
the operating room all morning and most of the afternoon.
When surgery is completed, your baby will return to the PCICU. The
The surgeon will discuss with you your babys surgery and condition. Once
your baby has been transferred from the operating room to the PCICU,
members can return to the bedside.
ventilator
multiple monitoring catheters
chest tubes
foley catheter
temporary pacing wires
continuous intravenous (IV) medications
Swallowing problems
Infants with HLHS are at risk for special medical issues during their hospital
course. These medical issues include:
feeds into the stomach, your baby will have a special swallowing study with
the speech therapist. Both the occupational and speech therapists will work
with your baby to recover and improve swallowing function.
Feeding problems
Because HLHS babies are at risk for swallowing problems, aspiration, and
tiring with feeding by mouth, many babies require a gastrostomy tube
is a feeding tube that is placed directly into the stomach by a surgeon. If
most HLHS babies become better feeders as they grow older, bigger, and
off the ventilator, a pediatric otolaryngologist (ear, nose throat doctor) will
evaluate the vocal cord function using a small bedside scope and camera.
8
year of age.
Chylous effusions
Chylous effusions are a milky, high fat drainage from the chest tubes. It
occurs when the lymphatic system in the body has been damaged or disrupted. Heart surgery increases the risk for having chylous effusions. If your
baby develops chylous effusions after his/her surgery, the medical team
will have to change your babys feedings to either skimmed breast milk or a
special low fat formula.
after surgery. However, every baby is different and there are many things
tor, infection problems, wound healing problems, unstable cardiac function,
and heart rhythm problems.
When your baby goes to 8D, he/she may have a feeding tube, temporary
pacing wires, or chest tubes.
Transfer to 8D
Transfer to 8D is an exciting time for families. 8D is a very important time
experience stressful.
trained to take care of children with heart defects. The 8D rooms have sofas
and private bathrooms. Parents are encouraged to sleep in the room with
their baby so they can learn their babys needs and continue developing
emotional bonds.
On 8D, an important focus for a HLHS baby will be learning to eat by
mouth. 8D is also when the transition from the hospital to home begins.
about how to provide the babys daily needs such as feeding, changing
diapers, giving medications and calming the baby when he or she is upset.
Parent education and teaching on the following topics will be given:
10
and second stage HLHS surgeries. During this time HLHS babies are very
fragile. They have a higher risk for poor growth, sickness, serious breathProgram is a special program to help your baby grow, prevent sudden unexpected death, and support you.
consent. Children are given sedation for the PICC line placement. The PICC
line is usually removed on the day of hospital discharge.
tioner will spend several days with you to give you training on the equipment and the special medical needs of your HLHS baby. The Interstage
Heart Program of SC
Heart Catheterization
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tion is performed for many reasons including:
To measure the pressures in the heart and lungs.
To take pictures of the veins entering the heart and the arteries
leaving the heart.
To open up narrowed areas in the heart, veins, or arteries.
11
Cardiac Glossary
Arterial Blood Gas
levels of oxygen and carbon dioxide in the blood.
Arterial Line
that blood pressure can be monitored continuously.
Artery
Cardiopulmonary bypass
used in the operating room during heart surgery to support the
heart and lungs.
Foley Catheter
drain urine.
Gastrostomy tube
the stomach by a pediatric surgeon.
Informed Consent The process of obtaining written
Vapotherm
the nose and helps with breathing.
Ventilator
lung support through a breathing tube (endotracheal tube).
Catheterization Lab
Intravenous or IV
Intubation - Placement of a breathing tube and ventilator.
Chest Tube
Nasal Cannula
to give oxygen directly into the nose.
Chest X-Ray
of the chest to examine the bones, heart, and lungs.
Nasogastric Tube
through the nose and into the stomach. It is used for feeding and
giving oral medications.
Stage I
The goals of Stage I surgery include:
Echocardiogram
the heart structure and function.
Effusion
the lungs (pleural) or heart (pericardial).
ECG
heart rhythm.
Peripheral IV
vein to give medications.
Endotracheal tube
mouth and throat and connects the patient to a ventilator.
Right Atrial
Line
the heart by the surgeon during heart surgery to continuously
monitor the pressure in the right atrium.
and left atrium) so that blood can return freely from the lungs
into the right heart.
choice a baby. Your babys doctors will discuss with you which
Stage I surgery is recommended for your baby. Both the Hybrid
procedure and Norwood operation are usually performed
Notes:
Notes:
Norwood Operation
The Norwood operation requires cardiopulmonary
(heart-lung) bypass.
Stage III
chambers of the heart) is small, a balloon or stent may be
important because it allows oxygen rich blood from the lungs
to reach the right heart and eventually out to the body.
Fontan
The Fontan is the Stage III surgery. This surgery is usually
cardiopulmonary (heart-lung) bypass.
Stage II
Bidirectional Glenn
The Bidirectional Glenn is the Stage II surgery. This surgery is
Glenn surgery requires cardiopulmonary (heart-lung) bypass.
right heart.
be removed.
be reconstructed.
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