Question

What steps need to be taken to ensure the child requiring long-term mechanical ventilatory assistance is discharged at the appropriate time?

Answer

The first determination that the treatment team needs to make is if the child is medically stable enough to be safely taken care of in the home. The child must be able to tolerate shifting from the high-tech institutional ventilator to the portable home mechanical ventilator. Then, the child must demonstrate respiratory stability with stable blood gases without any episodes of hypoxia or hypercapnia, as well as respiratory rate and work of breathing within reasonable limits. The child must also be able to tolerate variances in their daily routine as the home setting tends to be more active. The child must be able to tolerate transportation to various appointments and must demonstrate consistent growth.

After the child is determined to be medically stable, the treatment team must decide if the parents are willing and able to care for the child in the home. If a decision is made that the child will come home, a home assessment must take place to determine if the child can be housed safely in the home. Next, the family should be provided with extensive education. The parents should be made aware of the risks involved in caring for the child and the time it takes to care for a child who is dependant on a mechanical ventilator. The family should also be informed of any potential complications and understand that the risk of death exists. Two caregivers should be trained in the proper care of this patient and should go through a “trial period” in which the caregiver practices the caring for the child on a semi-independent basis and is allowed to call on the treatment team if needed. Once the trial period is complete and all of the other conditions have been met, caregiver readiness should be assessed and referrals for ongoing care should be made.

 

Engleman. (2011). Chapter 17: ” Life Care Planning for the Child with Asthma and Other Chronic Respiratory Conditions”, in Pediatric Life Care Planning and Case Management, Second Edition. (pages 435-464)

Engleman. (2004). Chapter 21:  “Life Care Planning for the Child with Asthma and Other Chronic Respiratory Conditions”, in Pediatric Life Care Planning and Case Management, First Edition. (pages 499-500)

 

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