+++
Nutrition and Intravenous
Access
++
Medically complex and fragile CSHCN with swallowing disorders
and other gastrointestinal problems often require supplemental or complete
enteral or parenteral feeding. It is important to recognize that
they may have very different nutritional needs than healthy children
of the same age or size. For example, an oxygen-dependent child
with chronic lung disease may have increased caloric needs due to increased
work of breathing and those caloric needs may suddenly decrease
if chronic ventilator support is initiated. Monitoring body weight
and length and head circumference is necessary in deciding on the
individualized nutritional plan. Periodic assessment of trace elements,
minerals, and electrolyte balance is also important, particularly
when caloric needs are low enough that standard enteral formulas must
be diluted. A nutritionist or gastroenterologist is often essential
in guiding nutritional management. For a detailed discussion of
specialized nutritional support refer to Chapter 33.
++
Indications for chronic central venous access in medically complex
and fragile CSHCN include continuous or intermittent intravenous nutrition,
chronic intravenous medications or immunotherapy, and assured venous
access in precarious children with poor peripheral access. Chronic
central venous access can be obtained with a peripherally inserted
central catheter (PICC), a tunneled central venous catheter (CVC),
or a subcutaneously implanted reservoir and catheter (PORT). Each
option is available as either a single lumen or a double lumen device
and CVCs are available with three lumens. PICCs tend to be used
when relatively short periods of access are needed. They pose little
danger of pneumothorax or bleeding, but their length and small diameter make
clotting of the catheter more frequent and can limit the infusion
rate. PICCs are not tunneled under the skin before entering the vein
so there is a greater potential for infection and accidental removal.
CVCs are often chosen when frequent or continuous long-term access
is needed. Although the collar of a tunneled CVC provides some protection, CVCs
may be damaged or dislodged by pulling on the catheter. PORTs are
used when intermittent, but secure, chronic central access is required.
The reservoir is relatively large and must be accessed with a needle
through the skin, making it less attractive for young children.
Most providers allow swimming in patients with PORTs, but discourage
it in patients with CVCs despite a lack of evidence that swimming
increases infections. Problems with PORTs include subcutaneous infiltration
when the needle is dislodged and surgical removal when infected.
++
Several problems can arise with chronic central venous access
(Table 124-2). Evidence-based recommendations
for preventing infections were published in 2002 by the Centers
for Disease Control and Prevention.16 Good hand-washing,
skin antisepsis, and catheter site dressing are essential. Specialized “central
access teams” reduce catheter-related infections, complications,
and costs and these teams are helpful in teaching providers and
families how to maintain and troubleshoot problems with the catheter.
Antibiotic “lock” or “flush” techniques
in which a vancomycin–heparin solution (eg, vancomycin
25 mcg/mL and heparin 10 units/mL) is instilled
in the catheter are also effective.17 The “lock” (ie,
allowing the solution to dwell in the catheter) was more effective
than simply flushing the solution through the catheter, but concern
about vancomycin-resistant organisms has led many to reserve the
use of “locks” for patients with repeated infections.
Other approaches to infection in chronic central venous access include
the use of antiseptic or antimicrobial-impregnated lines.
++
++
Clotting is another major complication of central catheters.
Prophylaxis against clots within the catheter is provided by heparin-containing
flushes when accessed frequently or by instilling 5 mL of a 100
unit/mL heparin solution when deaccessing a subcutaneously
implanted reservoir and catheter and monthly thereafter. If blood
cannot be withdrawn and a clot is suspected, tissue plasminogen
activator (tPA 0.5 mg in 2 mL) may be effective. The high frequency
of large vein thromboses associated with central lines is of concern,
particularly in children who are dependent on long-term central
venous access for survival. Thus, several groups recommend the use
of low doses of warfarin or low-molecular-weight heparin, although
support for this practice is limited.
+++
Respiratory Monitoring
++
Many medically complex and fragile CSHCN receive supplemental
oxygen or ventilator support at home and may benefit from pulse
oximetry to maintain safety and provide guidance in adjusting the
level of support. The pulse oximeter alarms should be set at levels
that alert the caretaker to assess the child and potentially intervene.
Setting limits too close to the child’s baseline range
will result in multiple alarms and decrease use of the monitor.
Instructions for the caregivers should note when supplemental oxygen
should be initiated (eg, when SpO2 is less than 90%)
and when their physician should be called.
++
Apnea monitors are generally used when medically complex and
fragile CSHCN with a tracheostomy or mechanical ventilator are asleep or
not directly observed by a caregiver. The monitor settings are typically
based on the child’s age (see Table 124-2).
Although positive-pressure home ventilators are equipped with high-
and low-inspiratory pressure alarms, an apnea alarm can be an important
adjunct safety device. For example, the ventilator’s low-pressure
alarm is designed to alert caregivers to ventilator circuit disconnection,
leakage within the ventilator circuit, or tracheostomy tube decannulation.
However, the low-pressure alarm may not be triggered after decannulation
because of the high resistance of small tracheostomy tubes18 or
after circuit disconnection because the tubing may be obstructed
by clothing or bedding.
+++
Suctioning and
Cough Assist Devices
++
Suctioning is required intermittently in children with tracheostomy
tubes and other medically complex and fragile CSHCN with copious
secretions and decreased airway clearance. Portable suction machines
are typically used for travel and stationary machines are used in
the home. A mechanical cough assist device (insufflator-exsufflator)
is used to stimulate a cough in individuals with neuromuscular weakness.
The cough assist device gradually applies a positive pressure to
the airway via a mask or mouthpiece, then rapidly shifts to a negative
pressure. A recent study showed that the in-exsufflator was safe,
well tolerated, and effective in preventing pulmonary complications
in 90% of children followed in a pediatric muscular dystrophy
clinic.19
+++
High-Frequency
Chest Compression
++
High-frequency chest compression (HFCC) is indicated for assistance
with airway clearance in patients with cystic fibrosis and is increasingly
used for other medically complex and fragile CSHCN with difficulty
mobilizing pulmonary secretions leading to recurrent pneumonia or
atelectasis.20 The HFCC device consists of two
components: an air delivery device with a motor-driven valve and
an inflatable vest. The air delivery device creates oscillating
air pressure that is delivered to the vest via hoses. This action
produces high-frequency chest compressions that create an oscillatory
effect within the airways to help mobilize bronchial secretions.
Generally, the frequency and pressure of the HFCC are set at 10
to 15 Hz and 4 to 6 cm of water, respectively, for 20 minutes 2
to 3 times per day.
++
Supplemental oxygen is commonly prescribed for home use in medically
complex and fragile CSHCN with chronic lung disease, congenital heart
disease, neuromuscular weakness, or chronic respiratory insufficiency
(with or without mechanical ventilation). A general guideline is
that the child must require less than or equal to 0.35 FIO2 to
be discharged from the hospital, and caregivers should contact the
physician when a higher FIO2 is required to maintain
saturations at a predefined acceptable level at home. In the hospital,
blenders and mechanical ventilators are capable of delivering a
specific FIO2. At home, 100% oxygen is
generally delivered and the desired FIO2 is achieved
by varying the flow rate via nasal cannula, mask, tracheostomy collar,
or ventilator. The amount of air entrained with each breath determines the
actual FIO2 received by the child. As a general
rule, the FIO2 likely exceeds 0.35 when oxygen
flow through a nasal cannula exceeds 2 liters per minute in infants
or 3 to 4 liters per minute in older children, when Venturi-type
valves calibrated for greater than 35% O2 are
used, when nonrebreather masks are used, and when flow exceeds 4
liters per minute on a home ventilator. It may be helpful to measure
the relationship between flow and FIO2 on a home
ventilator prior to discharging the child from hospital.
++
Oxygen is supplied in liquid form, as a compressed gas, or from
an oxygen concentrator. Liquid oxygen is more portable, and lightweight
liquid oxygen tanks can be refilled from a large reservoir tank
kept at home. However, liquid oxygen may cost more and may not last
as long as compressed oxygen because it evaporates. Moreover, liquid
oxygen is cold and can burn if it comes into contact with the skin.
Compressed oxygen is available in cylinders, ranging in size from
small portable tanks to large stationary tanks for home use. An
oxygen concentrator is an electric machine that can deliver approximately
4 liters per minute of 100% oxygen. The percentage decreases
at higher flow rates. It is recommended that families using a concentrator
have a backup cylinder of compressed oxygen in case of a power failure.
All families should be reminded never to smoke or allow others to
smoke when oxygen is being used.
++
Children require tracheostomy tubes for several reasons (Table 124-3). The tracheostomy tube is placed
surgically, after which the child is generally monitored in the
intensive care unit until the first tracheostomy tube change in 5
to 7 days. “Stay sutures” are placed on each side
of the tracheal incision to facilitate reinsertion of the tube if
it becomes dislodged before the stoma has matured. Complications
in the early postoperative period include accidental decannulation,
obstruction of the tube, infection, hemorrhage, and creation of
a false passage if the tube is improperly replaced. In general,
25% to 50% of children with tracheostomy tubes
will eventually have complications (typically infections and obstruction), but
death from a complication is rare.
++
++
The selection of the tracheostomy tube is based on several factors.
The tube should be at least 1 to 2 cm above the carina and the diameter should
be selected to avoid pressure on the tracheal wall, minimize work
of breathing, and, if possible, promote translaryngeal airflow in
order to facilitate vocalization. Pediatric tracheostomy tubes are
generally composed of silicone, which is quite flexible, or polyvinyl
chloride, which may be either flexible or rigid. They are characterized
by internal diameter, outer diameter, and cannula length, but are
usually referred to by their internal diameter. A neonatal tracheostomy tube
has a shorter cannula and neck flange (see Figure
124-1). The tracheostomy tube may have an inflatable cuff to
reduce the risk of aspiration and/or help reduce the “leak” when
requiring ventilator support. Depending on the manufacturer, the
cuff should be inflated with either air or sterile water.
++
++
Adequate humidification of the trachea to minimize thick secretions
in the tracheostomy tube is accomplished by using a tracheostomy collar
with humidified oxygen or air when sleeping and when ill. During
travel and other activities, the tracheostomy tube can be covered
with a heat and moisture exchanger (HME), speaking valve, or cap.
The speaking valve is a one-way valve that allows air to pass into
the tube on inspiration, but forcing air back through the vocal
cords on expiration. Children with tracheostomies generally require
suctioning at least three to four times per day and more frequently
during times of respiratory illness. Signs that a child needs suctioning
include rattling mucus sounds, tachypnea, secretions pooling at
the opening of the tracheostomy tube, or signs of respiratory distress.
Normal saline drops instilled prior to suctioning help loosen the
thick secretions or elicit a cough. The size of the suction catheter depends
on the size of the tracheostomy tube. Shallow suctioning removes
secretions at the opening of the tracheostomy. Suctioning just past
the tip of the tracheostomy tube allows complete clearance. The
desired depth of the suction catheter can be calculated as tracheostomy
length + adapter length + up to 5 mm as detailed
in eTable 124.3. Suctioning until the catheter
meets resistance from the carina should generally be avoided as
this may injure the lining of the airway. Applying suction pressure
both on insertion and withdrawal of the suction catheter facilitates
removal of the secretions. Following suctioning, many children with
tracheostomy tubes may benefit from a few manual ventilation breaths
to re-recruit the lung.
++
++
The child with a tracheostomy tube must be attended at all times
by a trained adult caregiver who knows emergency tracheostomy management.
A “to go” bag containing a suction machine with
suction catheters, extra tracheostomy tubes (one of the same size
and one a size smaller), ties, gloves, saline vials, a water-soluble
lubricant, an extra HME, a manual resuscitation device, and any
inhaled respiratory medications must accompany the child when outside
the home.21 In 2000, the Pediatric Assembly of
the American Thoracic Society published a consensus statement to
serve as a standard of care for children with a chronic tracheostomy
tube that provides detailed guidelines with supporting evidence.22
+++
Ventilatory Assistance
+++
Noninvasive
Mechanical Ventilation
++
Noninvasive mechanical ventilation is accomplished without an
endotracheal airway using either positive- or negative-pressure
support. Improved pediatric-appropriate masks and portable ventilators
designed for home use have helped make intermittent noninvasive positive-pressure
mechanical ventilation a reasonable therapeutic option for an increasing number
of medically complex and fragile CSHCN with chronic upper airway
obstruction or progressive respiratory insufficiency. Cognitively
intact, medically complex CSHCN can be managed with continuous noninvasive mechanical
ventilation using a combination of mask and positive-pressure ventilation
at night and a positive-pressure ventilator attached to a small
mouthpiece that the child can intermittently trigger to receive
a full ventilator breath (“sip and puff”) during
the day. The use of noninvasive mechanical ventilation has been shown
to reduce pneumonia or atelectasis, improve gas exchange, reduce
hospitalizations, and improve sleep quality.23
+++
Invasive Mechanical
Ventilation
++
Long-term invasive ventilation refers to the application of positive-pressure
ventilation through a tracheostomy tube. There are no specific guidelines
for inducing invasive mechanical ventilation. In general, this mode
is chosen when noninvasive interfaces are not accepted or tolerated,
when the need for ventilatory support exceeds a major part of the
day and the child cannot cooperate with the “sip and puff” device, or
when bulbar function is impaired and a tracheostomy tube is required
for airway hygiene. Medically complex and fragile children who require
invasive mechanical ventilation can be safely cared for at home
and successfully reintegrated into the community. Caregivers (including
nurses and respite caregivers) should be formally trained in how
to provide care for these children. In general, medical cost comparisons between
hospital and home care reveal that for most children, care at home
was less expensive than in a hospital, although this is somewhat
dependent on the complexity of the child’s care, the amount
of nursing care required at home, the number and duration of readmissions
to the hospital, and the ability of parents to provide unpaid care.
+++
Functionality
and Mobility
++
Chronic illness and significant injury in childhood usually result
in impairment, defined by the World Health Organization (WHO) as
any loss or abnormality of psychological, physical, or anatomic
structure or function. Disability is the limitation in activity
caused by impairment. Handicap exists when an impairment or disability
limits or prevents participation in a role that is normal for age
and gender, within the social and cultural milieu. Goals of management
of pediatric chronic disease and disability include minimizing the
impairment and maximizing activity and participation in age-appropriate life
roles (school, play, work). The approach to care is often interdisciplinary
and should be coordinated, comprehensive, and family-centered.
++
The major objective in disability management is to facilitate
independent function in the particular areas, referred to as domains, that
are affected. Function is promoted in mobility, self-care, communication,
cognition, and/or psychosocial domains. In each area, efforts
are initially directed toward assisting the child to accomplish
skills independently. This is accomplished through treatment strategies that
enhance the functional capacity either of the affected system, when
skills can be restored or developed, or through compensatory strategies
using systems unaffected by the pathologic condition. Secondary
disability should be prevented to the extent possible. When necessary,
prescription of equipment or modifications to the physical or social
environment may provide the child with greater independence. Psychological
and educational techniques may also enhance patient performance. Prescriptions
for therapy programs, adaptive equipment, orthoses, and prostheses
should be age-appropriate and include consideration of the child’s ongoing
growth and development.
++
Orthoses can be defined as custom-fitted devices applied to or
around a body segment that are designed to meet specific musculoskeletal
goals, such as (1) prevention of movement because of abnormal tone
or that are involuntary; (2) maintenance of joint alignment to facilitate
body mechanics; and (3) stabilization of a joint.24 Acronyms
used to describe orthoses generally refer to the body part (eg,
AFO is the acronym for ankle-foot orthosis). The family and child should
meet with a specialist skilled in functionality (eg, rehabilitation,
neurodevelopmental pediatrics, orthopedics) and the child’s therapists
to establish the goals and appropriate use and care of an orthosis
before it is prescribed. Orthoses should be simple, durable, strong,
easy to use, lightweight, and cosmetically pleasing. They must fit
well and be used as prescribed to be effective. The child’s
condition and the purpose of the orthosis should be indicated on
the prescription and consultation with an orthotist considered.
Shoes for use with orthotics should have a wide toe box with an upper
of soft leather, canvas, synthetic, or nylon fabric and a tongue
that goes far down into the toe box. Specialty shoes are expensive,
but insurers may reimburse the family if a prescription and letter
of medical necessity are presented. Skin breakdown is the most common
complication of orthoses. Skin should be checked daily, and if an
area of redness lasts longer than 20 to 30 minutes, the orthotist
or physician should be notified. The goals, fit, and use of the
orthoses should be reviewed at least every 6 months until growth
stabilizes and each time the child experiences therapist transitions (eg,
when starting school).
+++
Wheeled Mobility
and Seating
++
A child’s inability to master the environment independently
may lead to decreased socialization, learned helplessness, and delayed
development. Therefore, wheeled mobility should be considered as
early as necessary to facilitate developmentally appropriate independence
and functional activity. Because poor positioning and restriction
of movement can result in pressure areas and musculoskeletal deformity,
mobility devices are often combined with customized positioning
or seating systems when the child needs assistance to maintain appropriate
position and use of the trunk, head, or limbs. Multiple physical
impairments may lead to the need for wheeled mobility (eg, weakness,
low endurance, movement disorders, abnormal tone, pain syndromes).
The type of wheeled mobility should be based on the child’s
immediate and anticipated needs and goals (eg, duration of need, ability
to self propel, other assistive technology, surgery, ability to
partially ambulate), family issues (eg, transportation, access,
lifting restrictions), and the proposed environment in which the
device will be used (Table 124-4). Although
studies have shown that 12- to 18-month-old children with normal
cognition can learn to use powered mobility safely, evaluation for
motorized options requires detailed assessment of sensory, motor,
cognitive, and behavioral status as well as consideration of accessibility.25,26
++
+++
Car Restraints
and Transportation
++
Most medically complex and fragile CSHCN will be safest when
positioned facing rearward in the back seat of the car for as long
as possible. Others will require alternative restraints.27,28 Resources
that may be helpful in choosing restraints include the National
Highway Traffic Safety Administration (http://www.nhtsa.dot.gov/people/injury/childps/contacts/index/cfm),
Riley Hospital Automotive Safety Program (http://www.preventinjury.org),
the AAP Car Shopping Guide for Children (http://www.aap.org/family/carseatguide.htm), and the Transport
Canada road safety site (http://www.tc.gc.ca/roadsafety).
Commercially available car beds are designed to accommodate infants
in the 1.8 to 9 kg range. Car beds are indicated for low-birth-weight
infants (less than 2.3 kg) who failed conventional car seat testing
prior to discharge and infants with other selected conditions (Table 124-5). Padding must not be placed
between the infant and the car bed or the harness system because
it may interfere with the effectiveness of the restraint system. Safety
vests are designed for children at least 2 years old, weighing between
9 and 76 kg. These children cannot sit safely in a conventional
car seat or wear appropriate lap belt or shoulder harness because
of motor, behavioral, or positioning problems. The safety vest is
applied prior to placing a child in the car and then it is anchored to
the vehicle by a tether strap and seatbelt. Specialized
car seats are designed for children between 10
and 48 kg who require more physical support than is provided by
conventional seats. The Federal Motor Vehicle Safety Standard status
of the particular model should be verified before prescribing or
advising a family to purchase one. Parents should be trained in
appropriate application of necessary tethers and harness fit since
problems with restraints usually arise from inappropriate application
and fit of tether and harness.
++
++
Additional consideration in the use of car restraints applies
to selected populations. Children with tracheostomies should avoid
restraint systems that may impair ventilation or risk impact to
the tracheostomy tube in an accident. They should be kept facing
the rear in a convertible, well-fitting car seat. When the seat
is turned forward, one must ensure that the chin does not cover
the tracheostomy. Pulse oximetry can be used to verify appropriate
saturations while seated in the car seat. Children with seizure
disorders should be in restraints that will provide appropriate
support of airway during and after a seizure. A specialized car
seat restraint may be necessary for a child weighing more than 20
kg who has frequent seizures, because this is the usual upper weight
limit for commercial car seats with harness straps. Children with
hypotonia and/or risk for high cervical subluxation (eg,
Down syndrome, achondroplasia) or fractures (eg, osteogenesis imperfecta)
should use a rear-facing car seat as long as possible. A standard convertible
child safety seat allows children weighing up to 15 kg to face rearward.
++
Children who use wheelchairs should ride in a properly fitting
car seat rather than their wheelchair whenever possible. If transport
in the wheelchair is necessary, it should be secured in a forward-facing
position with 4-point tie-downs for the chair and a separate 3-point belt
restraint for the child. Trays must be removed and head support
is strongly advised. Other medical equipment should be anchored to
the floor if possible. There are no tethers made specifically for
medical equipment in a private vehicle. Thus, options include placing
the equipment under the vehicle seat or wedging it in place with
pillows, foam, or blankets. Unused seat belts may also be used to
ensure that the equipment will remain secured in the event of a crash. Batteries
for equipment should be dry cell or gel cell to limit flammability.
+++
Transfer AIDS
and Lifts
++
Many medically fragile and complex CSHCN will attain close to
adult size and weight. Some are able to bear weight, but need assistance
to move from one surface to another. Safe and efficient transfers
require skill and practice. Therapists can instruct caregivers in
appropriate techniques. A full-lift transfer is required if the child
bears no weight when being transferred. Transfer aids should be
considered for any child who weighs more than 25 kg and cannot be safely
transferred by one caregiver alone. Aids should also be considered
for children with inconsistent ability to assist in transfers (eg, frequent
seizures, behavioral issues, variable endurance) or when caregivers
cannot safely lift a child. There is no single transfer aid that
accomplishes full-lift transfers in all settings from all surfaces
(see eTable 124.4). If possible, the family
should try the equipment before buying it; if the mechanical aid
is not easy and efficient, they will likely revert to lifting the
child manually. Some insurers consider transfer aids medically necessary
only for transfers between bed and chair, wheelchair, or commode.
Reimbursement for toilet lifts and ceiling lifts mounted on tracks
will often require strong advocacy.
++
++
Bathing a baby is relatively easy compared with transferring
and positioning a slippery child, particularly when the child has
poor head control or severely affected muscle tone. When children
have episodic emergencies (eg, seizures or mucous plugs in a tracheostomy), bathing
equipment that allows the caretaker use of both hands is essential.
Bathing equipment should provide comfortable restraint and positioning
while ensuring safety during medical emergencies. Anticipated growth,
changes in medical condition, limitations of the bathroom space,
and the need to accommodate other family members should all be considered
when evaluating bathroom equipment. As with much of durable medical
equipment, it is often best to test equipment prior to purchase
or purchase from a vendor that allows exchanges in case it does
not meet family and child goals. Low-technology options for the child
with good head and trunk control, but who has poor balance, include
waterproof upright corner chairs with anterior trunk supports and
pelvic belts. Medium-technology systems restrain the child in a
semireclining position and are made for the child who cannot sit
or maintain head control. Features include adjustable seat and back,
trunk and pelvic harness, leg straps, and adjustable frame height for
easier transfers. High-technology systems include a battery-operated,
push-button lift for individuals age 3 to adult.
+++
Access to and
in the Home
++
Remodeling should be considered when access to the home or living
spaces limits caregiving, the child’s anticipated acquisition
of independence skills, or the safety of child and caregiver. Home
adaptations can also improve the child’s ability to perform
activities of daily living (eating, dressing, hygiene) and participate
in social and avocational activities within both the family unit
and the community.29 Input from developmental and
rehabilitation specialists and therapists can help families develop
realistic goals and plan environmental modifications. Leveling thresholds
and investing in automatic power door openers can improve access
through the front door. External doorways should be widened to 36
in if possible. The majority of homes have at least one or two steps
leading up to the external door. Building codes require that wheelchair
ramps be 12 in long for every 1 in rise. Ramps should be a minimum
of 36 in wide, have enclosed handrails, and have a 5-ft-square level
area for maneuvering on the landing. Vertical platform lifts consist
of a platform attached to a tower that houses an electric motor
and drive mechanism. They have a lifting height of 12 ft and require
30 sq ft of space. Porch lifts are similar to vertical platform
lifts, but have a maximum lifting height of about 6 ft. They are
especially useful when space is limited. Chair lifts enable the
user to be carried up the stairs and can be used both inside and
outside and on straight or curved stairways, but are not appropriate
for children who use a wheelchair full time. All renovations are
relatively expensive and may not be reimbursed by insurance companies. Families
should be aware that many state programs offer financial assistance
for needed home remodeling if the home is owned, but often not for
rental homes. Alternative solutions for moving the child during
an emergency must be considered.
++
Bathrooms are often the smallest rooms in the house, with a narrow
doorway and turning radius that limits easy access to the toilet,
sink and bath and shower. Low-tech solutions include installing
a hand shower in the bathtub, using single-lever faucets, and modifying
the toilet by raising or lowering the toilet seat height. The use
of a bath or shower chair and a commode with needed supports is
often helpful. Minor modifications to the bathroom include using
nonskid tile and removing counter cabinets to increase wheelchair
accessibility. Call buttons and intercoms can be installed for emergency
assistance. High-technology solutions include ceiling-mounted lift,
power bathtub lift, electronic faucets, self-flushing toilets, and
walk-in baths or showers.
++
Access to the bedroom is also essential. Low-technology modifications
include simply adjusting the bed height for ease of transfer; changing
from swinging to sliding doors to increase space and visibility
within closets; and lowering closet shelves so that a child, short adult,
or seated person can choose clothing. A bedside compact refrigerator
is often useful for fluids or medications and an emergency button
or intercom to request assistance is essential. Higher-tech solutions
include power beds. Similar accommodations throughout the home (eg,
kitchen and living room) can make it possible for the child to reach
different rooms and participate to the best of his or her abilities.