Home Ventilation in Children

Introduction: Home mechanical ventilation (HMV) can prolong survival and improve quality of life. The objectives were to review the challenges, clinical conditions and outcome of children who were discharged from the hospital on respiratory support. Material and Methods: Twenty four patients, who were electively discharged from PICU and had received home ventilatory support for more than 15 days, were enrolled over 11 year study period. Patients were followed up monthly, for two years, for ventilatory requirements, any problems encountered during previous month and for any complication. Results: Twenty four patients with a median age of 3.5 years were discharged home with ventilatory support. HMV was started in 2001 at our hospital. Patents received home ventilation for a median period 5.4 months. Twenty (83.3%) patients received invasive mechanical ventilation via tracheostomy and four (16.7%) patients received non-invasive mechanical ventilation. Twelve (50%) patients received ventilatory support for more than 20 hrs a day and twelve (50%) patients received only during sleep. On follow up for two years for each patient, twenty (83.3%) patients successfully came off from ventilatory support while, two (8.3%) patients died and two (8.3%) lost to follow-up. Conclusion: HMV can be safely applied in selected children with CRF after providing adequate training to the care givers. For its more efficient use, we need to have good social support and medical assistance which can be extended to their homes to meet their complete health care needs. J Nepal Paediatr Soc 2015;35(1):85-88


Introduction
M echanical ven latory assistance is essen al for survival in children with respiratory failure.Children who require longterm ven latory support generally spend a considerable amount of me in hospital, par cularly in pediatric intensive care units.It is generally accepted that social, psychological, emo onal and developmental needs of children are best met at home 1 .Ven la on at home can be delivered invasively via tracheostomy or noninvasively by either mask intermi ent posi ve or nega ve-pressure devices 2 .The majority of HMV pa ents are given ven latory support in their homes but some live in public health care ins tu ons or nursing homes.Family members are o en involved in daily care and perform technical procedures 3 .These families are assisted by community health care services, especially when the pa ent is completely dependent on mechanical ven latory support.A number of studies have inves gated the strain put on family caregivers for this pa ent group, especially the pediatric pa ent popula on, but few studies have focused on iden fying the challenges of caring for at-home HMV pa ents using the perspec ve of community health care services 4,5 .Majority of studies are from west.Data is very scarce from developing countries where most of the hospitals lack in home ven la on facili es.The objec ve of this study was to review the challenges, clinical condi ons and outcome of children who are discharged from the hospital on respiratory support, in developing countries.

Material and Methods
All successive pa ents who were discharged on mechanical ven la on from 2001 to 2013 at Sir Ganga Ram Hospital (SGRH), New Delhi were evaluated.Pa ents were analyzed by using a standardized data extrac on form which included pa ent's age, sex, age at which HMV was started, underlying illness, ven la on methods, concurrent use of oxygen therapy, clinical fi ndings and oxygen satura on.Nutri onal status was assessed using Z-scores of height and weight.Pa ents were rou nely evaluated every month.Echocardiography for pulmonary hypertension was performed annually.Pa ents were also interviewed regarding the problems which they experienced during that period.
Ini a on of home ven la on: Chronic respiratory failure (CRF) can be defi ned as the need for mechanical ven latory support of at least 4 hours per day for a month or longer 6 .In this study, pa ents with CRF received home ven la on a er failure to wean from mechanical ven la on.The primary indica on for the use of HMV was chronic alveolar hypoven la on with associated respiratory failure as indicated by hypoxemia and hypercapnia.
Ven la on Method: Pa ents received either invasive mechanical ven la on via tracheostomy or NIMV (Non-invasive mechanical ven la on) with nasal or full face mask.Se ngs were adjusted to fulfi ll the needs of the pa ents.Children who were to be sent home on ven lator support were selected based on steps described in Table 1.Caregivers were thoroughly trained in using the home ven latory equipment, aspira on preven on, cardiopulmonary resuscita on, tracheostomy tube care, postural drainage prior to the hospital discharge.Educa on on the use of the equipment was reinforced during each visit.A er discharge pa ents were visited periodically by technicians of the ven lator company to check their ven lator func onality.Professional nursing was not available for any of the pa ents but both parents were trained to take care of their child.Rou ne home care plans, transporta on and emergency procedures with a checklist of ps on handling unexpected problems were explained to the parents.The 24 hour emergency helpline telephone numbers were also provided.Pa ents visited the hospital every 1-3 weekly.Caregivers called the doctor or the technicians of the home ven lator company, when required.

Results
Out of twenty-four pa ents, enrolled over 11 years (2001 to 2011), there was no predisposi on for either sex noted (Table 2).Children from all age groups (6 months to 14 years) were enrolled with a median of 3.5 years.In our study, younger children clearly outnumbered rest of the group as fourteen (58.3%) children were less than three years old with only six (25%) children in between three to six years and four (16.7%) were more than six years old.
Pa ents received home ven la on for a median period of 5.4 months (range: 3 months-12 months).They were classifi ed into three categories of CRF, central control disorders (n=1), chronic lung disease (n=10), and neuromuscular disorder (n=13).All 24 pa ents were started on home ven la on a er the failure to wean from mechanical ven la on..All pa ents were ven lated using pressure-controlled ven la on.The median posi ve inspiratory pressure, posi ve end-expiratory pressure and respiratory rate were 12 mmHg (range 11-14), 6 mmHg (range4-7) and 15 breaths per minute (range 12-20) respec vely.Twenty (83.3%) pa ents received invasive mechanical ven la on via tracheostomy.A er one month of discharge twelve (50%) pa ents received ven latory support for 20 hours while rest required ven latory support only during overnight sleep.Four (16.7%) pa ents received NIMV.All received NIMV via full face mask and required only during overnight sleep.None of the pa ents had pulmonary hypertension on evalua on by echocardiography.Equal number (12 each) of pa ents received nasojejunal and gastrostomy tube feeding.A er two years (each child) follow-up, out of 24 pa ents, 20 (83.3%) came out from ven latory support, two (8.3%) pa ent died due to chest infec on and sep cemia and two (8.3%) pa ent lost to follow up.All pa ents were evaluated monthly.
During fi rst four weeks a er discharge, six (25%) pa ents had equipment failure which was managed by self infl a ng ambu bagging but none had hypoxia.Six (25%) had diffi culty in decannula on, of tracheostomy, a er successful weaning from ven lators.All ven lators were electricity operated with dedicated invertors as backup.
During home ven la on most of the care was provided by parents.In one case, father was main caregiver and shi ed his shop at home.In twenty-two (91.7%) cases mothers were main caregivers and more than 50.0 % gave up their job.Eight (33.3%) parents shi ed home near Sir Ganga Ram Hospital.Four (16.7%) had family discordance and got separated.

Table 1:
Outline of management for long-term mechanical ven la on.
Step 1: Irreversible or slow recovery poten al disease was recognized.
Step 2: Parents were adequately trained for using a ven lator care.
Step 3: Ven lator with good home service was chosen.
Step 4: Machine applied in PICU for 1 week.
Step 5: Parents counseled about the needs of the home ven la on.
Step 6: Children were discharge on ven latory support.
Step 7: Twenty-four hours helpline service was provided.

Discussion
Our hospital is a ter ary referral hospital.Home ven lator support at this hospital began in 2001 and the number of children treated has increased in recent years (Fig- 1).The HMV has been a ributed to improved survival rates for cri cally ill children 7 .
In this study, we discuss our experience of more than a decade with HMV in pa ents with CRF.We had very small numbers but high success rate (>80%).Invasive mechanical ven la on was required in 83.3 % pa ents.Similar study was safely done in 61.1% pa ents by Ralph 8 .Pa ents and caregivers almost invariably prefer non-invasive aids over tracheostomy for safety, convenience, appearance, comfort, facilita ng eff ect on speech, sleep and swallowing and general acceptability 9,10,11 .The use of NIMV in children has increased in recent years.In our study, we managed only four (16.7%) children with NIMV.However, Oktem et al studied in 55.9 % pa ents, where 20.6 % pa ents died.As it was a large study, we were unable to compare it 12 .
The goal of long-term ven lator support is to correct CRF to allow the child to reach his or her maximum developmental poten al and disease reversal.Our data shows that, 75.0 % pa ents survived and were ven lator free.
This study has demonstrated that a failure of ven lator equipment occurs very infrequently.An analysis of a survey of 150 ven lator-assisted pa ents over a period of one year found that there was one mechanical failure for every 1.25years of con nuous use and 99 % of ven lator associated problem could be solved at home 13 .In our study, only six (25%) pa ents had ven lator failure but they did not suff er from any complica ons as the parents effi ciently resuscitated the children during equipment failure.These families were re-educated to deal with such episodes in me.The childhood CRF can improve with growth, with an improvement of the underlying disease 14 .In this study, 83.3 % pa ents came off ven lator support when their underlying diseases improved.Twelve pa ents had cri cal care neuromyopathy, eight had chronic lung disease, and one of each had myopathy, hypoxic encephalopathy, acute porphyria and glycogen storage disorder.Two pa ents were lost to follow up and two died due to chest infec on with sep cemia.An increase in depressive symptoms and adverse health eff ects has been reported in mothers and parents who care for medically fragile or chronically ill children at home 15,16 .All of the parents in this study ini ally worried about the home care.

Conclusion
Our objec ves were to review the challenges, clinical condi ons and outcome of children who were discharged from the hospital on respiratory support which we have described and we can say that ven la on can be safely applied in selected children with CRF with close monitoring and proper follow-up, despite the lack of professional home care nurses or respiratory therapists.

Table 2 :
Pa ent characteris cs according to the home ven la on.