Health Maintenance

The diagnosis of a chronic illness may be made at time.Some disorders are diagnosed before birth,many in the newborn period,and others during childhood.After diagnosing a chronic illness,the next step is to address the medical issues.Who will provide care?Where will it be provided?What is the best way to access the system?When the diagnosis is made,various provider options are available but any choices made are likely to changes as time goes on.
The changing environment of health care in the United States makes it difficult for the patient,who is now the consumer,and the family to understand all the choices.Managed Care Organizations (MCOs) have been established to provide optimal health care while at the same time reducing costs.MCOs cover a multitude of approaches to providing care.They include Health Maintenance Organizations (HMOs), which include Kaiser Permanent and a series of groups of physicians or providers who are united together.Examples includes PPOs, which are Preferred Provider Organizations, and IPAs which are Independent Physicians Associations.
  He barriers of access to medical care for children are financial,systems,and knowledge-based.Children with disabilities are more likely to receive physician care if they have insurance than if they do not.It would make sense that the more that health care services are needed,the more they are accessed,but in reality the poor,uninsured,minority,and single-parent children will receive less medical care.This may be because of the barriers to care as well as an unwillingness to seek care.One study showed that uninsured children received 40 percent less care than their incured counterparts.The goals ot Medicated nad Supplemental Security Insurance (SSI) programs have improved access to health care for many poor families in the last 20 years,but many more who needs care do not receive it.In addition,there are many families who utilize limited resourcess who do not need or benefit from them.
Managed care  has problems that are the result of decisions being made on the basis of cost rather than necessity.Outcome measures have been implied as justifying the sharing of cost and revenue.This does not justify withholding treatment for a specific individual who may benefit fro therapy.A treatment that has the potential to reduce costs,for example an intervention that will lower hospitalization rates,should lead to its consideration,but if it is not recognized by the payor,it may be denied because the rules say so.Medicaid benefits vary considerably from state to state and while the regulations are appropriately restrictive they are impossibly complicated and the bureaucracyso involved that they do not assure that the patient and families who need the most,get the most.Within the last few years,studies have shown that a significant proportion of children were without health insurance for 1 year, and that of the children with chronic disorders,76 percent had private insurance , 11 percent had Medicated, and 13 percent had no insurance.
There are many levels of medical care and some of the levels may be accessed more easily than others.In- and out-patient care,drugs,home care,durable medical equipment,various therapies (e.g., respiratory, physical, occupational), mental health, dental, and eye care may all have different levels of accessibility and payment.Choosing a health plan involves learning what options are available and selecting the one that has the most potential to meets the needs.If there is a child with a chronic disorder and different options are available, it is helpful to discuss this with a clinician involved with the care.Unfortunately, the selection of the health plan is often dependent on the occupation of the parent (whose employer or insurance company provides the alternatives) rather than on the needs of the child with the chronic disorder.
The additional needs pt many of the conditions described also put a burden on the health care system.Because of the complex nature of many conditions and the treatment that they require, there is a financial burden as well as a systems problem.Multiple specialist,surgical procedures, and complex therapies tend to be expensive.Capitated managed care systems are not geared to providing care for small populations of medically needy children who require techonologically advanced and specialized care, which tends to be very expensive.Cost effectiveness   specialized care can be achieved but the question is where should the line be drawn as to how much care is provided and who should draw that line?In the last few years the lines have been drawn at the point where there is actually a reduction in the level of care that is provided for many patients who were able to receive it in the past.Outcomes research will reveal how much this impacts morbidity and mortality.

Tracheostomy

Tracheostomy is performed for airway abnormalities such as subglottic stenosis or Tracheomalacia. Infants who required long-termassisted ventilation usually will have a Tracheostomy. 
Tracheostomy tubes can be cuffed of non-cuffed. A fenestrated tube has openings in the curve of the tube that allow air to be expired through the glottis (voicebox).
Suctioning is performed when the patient is unable to cough out secretions. The Tracheostomy tube is changed at intervals, usually every 2-4 weeks. Young children tend to be lying down with a towel behind the shoulder blades to make visualization of the neck easier. Older children may manage better sitting up for the change. Caregivers need to feel comfortable with Tracheostomy changes. If there is an emergency situation it may be from a blocked tube and caregivers need to be able to change the tube immediately. On occasions, if there is difficulty reinserting the tube, on size smaller should be used because it is easier to insert.

Home Infant Apnea Monitoring

Home monitors measure beat-to-beat heart rate and will alarm, usually within 3 seconds, if the rate is below a defined level. The heart rate alarm is usually set at 80 beats per minute (bpm) on discharge from the nursery and 60 bpm after about 3 months of age. There is usually a delay for apnea,  which implies absence of respiration, for 20 seconds. The monitors are impedance pneumographs which monitor chest wall movement. They provide information about central apnea (no chest wall movement and no air movement) but do not distinguish obstructive apnea. Caretakers are thaugt to respond to monitor alarms by initially checking the baby. If there is apnea, the baby is stimulated to alter state, which usually restores respiratory effort. Rarely, it is necessary to initiate CPR. Current monitors document the alarms and provide and event log that allows the clinician to evaluate the significance of the episodes.

Home Ventilation

Indications for mechanical ventilation at home include respiratory disoreders such as BPD, control of breathing disorders such as central apnea, and neomuscular disorders such as muscular dystrophy. Most children who require long-term ventilation will undergo tracheotomy. Non-invasive ventilation is mostlu used for nocturnal ventilation. The majority of ventilatiors used at home are volume-cycled machines, which deliver a set tidal volume. Many machines are microprocessor controlled and can be used with a wheelchair.


It is important that back-up systems are available. This includes a means of applying bag ventilation and usually a backup ventilator in case the first one fails. Various power sources are available for the primary system. These include standard AC power, back-up rechargeable battery, and additional battery power which may include an automotive-type battery.

Non-Invasive Home Mechanical Ventilation

Nasal positive pressure ventilation is applied by nasal or face mask. It is commonly used for night-time ventilation in neuromuscular disease or obstructive sleep apnea. Positive pressure is applied at intervals or continuously. The former  is intermittent positive pressure ventilation and the letter is continous positive airway pressure. The system often used is BiPAP, or bilevel positive airway pressure.Some children tolerate this well but others do not.
Negative pressure ventilation is applied by an iron-lung or by a cuirasse (chest shell). Negative pressure, which results in movement of air the lungs, is applied to the chest. The iron-lung, which saved so many lives in the polio era, has limited use. The cuirasse may be useful in neuromuscular weakness disorders but may worsen obstructive apnea.

Airway Clearance Techniques

Chest Physiotherapy (CPT) is indicated for clearance of airway secretions. Airway clearance techniques can be utilized in the home. The concept of postural drainage, percussion, and vibration is that the secretions are mobilized by the cest wall movement in a position that uses gravity to aid drainage. Percussion is performed using a cupped hand or a device such as plastics or rubber handled substitute. Vibrationnis usually applied with a mechanical device with increased pressure during expiration. Infants and small children can be held on a pillow or the lap of treater. Older children can be tilted using a board or bed or can learn to self-administer. Caregivers need to be taught the techniques.

If the secretion are moved from the periphery of the lung toward the central airway, they can then be coughed out. Huffing is coughing with an open golttis. It is thought to be more efficient in removal of mucus and is also called forced expiratory technique. It is usual to perform perucussion or vibration for 1 minute per segment except that extended therapy is recommended for cystic fibrosis patients and 2 minutes per segment is used. Additional methods for ACT include the flutter valve, positive expiratory pressure (PEP) valve, and autogenic drainage.

It is usual to utilize bronchodilator medications prior to strarting chest PT. The contraindications to CPT include hemoptysis and pneumothorax. Chest pain and rib tenderness may be significant and lead to modification of the therapy. Chouging may be difficult if there is pain in the chest or abdomen.

Suction machines are used at home for aspiration of secretions. A tonsillar or Yankauer catheter is used for oropharyngeal suctioning and suction catheter for endotracheal secretions. It is sensible to have both electric and battery-operated machines.

Aerosol Therapy

Many children with asthma, reactive airway disease, and broncho pulmonary dyplasia will utilize bronchodilator or anti-inflam matory medications. Patients with cystic fibrosis commonly use aerosol antibiotics and mucolytics. Medications may be delivered by metered dose inhaler (MDI, also known as puffer) or by nebulizer. MDIs need to be used correctly and the technique should be reviewed at each clinic visit. A spacer should be used with the MDIs children and a mouthpiece or facemask, depending on the medication to be delivered even to infants.

MDI therapy allows delivery of medicine in childen and has advantage of portability and convenience. Compressor-driven nebulizers are used to deliver larger volumes of medication. The two  components of the system are the compressor and the nebulizer. The compressor produces a flow rate of 8-15L/min at abaut 20 psi. It can be electricity or battery-driven.