The answers to the following questions are provided briefly. You can contact the hotline for more detailed and personalized responses.
Additionally, we have provided a variety of tips and ideas for easier and more convenient daily management at home. Feel free to read and get inspired by ideas that might suit you as well.
Our goal is to be of assistance to you in this unique journey of life, and to provide you with less familiar information that you may have been seeking answers to.
Of course, the information is provided as a recommendation only and does not substitute for specific medical advice for the child or family member.
If something is unclear to you or if you have additional information, ideas, or tips that have helped you and can assist others, please share with us.
The decision to undergo such a procedure is not a simple one, and the answer to this question cannot be given via digital media. It is an individual question that applies to each person specifically.
In any case, it’s important to be prepared for this stage if it does come. Ultimately, reality will dictate the necessity—or not—of the procedure.
It’s important to understand that a recommendation for a tracheostomy is given only after attempts to avoid invasive ventilation procedures have been exhausted.
To ease your concerns and ensure that the recommendation isn’t being made too hastily, you can confirm with the doctors that all other methods and attempts have been explored before arriving at this point.
The concern is understandable. However, it’s important to break down that concern and understand exactly what lies behind it.
We all know that breathing is fundamental to life, which is why we do everything possible to provide the patient with adequate and safe ventilation for their lungs. Artificial ventilation can be an excellent solution in cases where there is an inability to breathe effectively, adequately, and safely.
It’s important to know that for the patient, breathing difficulties and the effort of breathing are distressing and frightening feelings that, in themselves, cause real suffering. In many cases, artificial ventilation is far preferable for the patient and offers a better quality of life.
It must be understood that even an endotracheal tube (ETT) is considered an invasive procedure and comes with various implications and risks. For example: the tube can cause internal pressure sores that sometimes go unnoticed and can develop into life-threatening conditions, the tube may shift, making ventilation less effective, and more.
Therefore, according to international medical safety protocols, when ventilation via ETT exceeds ten to fourteen days (and especially if there are issues with ventilation through the tube), it is recommended to switch to ventilation via tracheostomy.
From the patient’s comfort perspective, ventilation through an ETT is much more uncomfortable and bothersome compared to tracheostomy ventilation. For this reason, ventilation through an ETT usually requires the use of anesthetics, regardless of the underlying medical condition, something that is often unnecessary when switching to tracheostomy ventilation.
Respiration via tracheostomy is indeed reversible. When a doctor determines that weaning off ventilation is possible and the cannula is no longer necessary, it is removed. In most cases, the opening gradually closes on its own. If it does not, this can be addressed through a simple surgical procedure.
When considering a tracheostomy, there is often a sense that the decision is life-altering. It is important to balance this significant concern with the patient’s well-being, as in most cases, a tracheostomy is the best choice. It provides a higher quality of life by ensuring easier, fuller, and safer breathing.
Indeed, society struggles to easily accept harsh appearances. A tracheostomy is a somewhat intimidating sight, as is the ventilator with the protruding tube.
But like anything else, people adapt to it. The more they are exposed to it, the quicker they adjust and accept it with understanding.
There will come a time when society no longer notices the surrounding equipment and sees only the person, as an individual.
There are several medical conditions that can lead to respiratory failure and the need for a ventilator.
Here are some examples:
■ Conditions affecting the lungs (extreme prematurity, severe infections, various lung diseases).
■ Diseases of the muscles and bones that may result in respiratory weakness.
■ Nervous system disorders that lead to poor or weak respiratory effort.
■ Narrowed or collapsing airways that restrict airflow and breathing.
■ Trauma causing external injury to the airways (accident, injury).
Sometimes, a combination of issues leads to the need for ventilation.
A ventilator helps the patient breathe more effectively. It does so in several ways:
■ By blowing air into the lungs, the ventilator keeps the airways open, improves the clearance of secretions, helps the lungs expand, and prevents the lungs from collapsing or becoming compressed. This condition is called atelectasis – lung collapse.
■ The ventilator helps introduce a volume of air containing more oxygen and removes carbon dioxide.
■ The ventilator reduces the patient’s respiratory effort, allowing them to conserve energy for other needs, such as development, progress, and growth.
Some patients on ventilation improve over time and reach a point where they no longer need respiratory support. If and when the patient is ready to reduce respiratory support, the attending doctor will guide you through the weaning process – how to gradually reduce the use of the ventilator until full weaning is achieved.
This process should not be attempted independently. Independent weaning attempts have often, based on the experiences of others, led to conditions such as lung collapse, severe pneumonia, and other injuries.
When the patient is capable, the medical team will guide you on what to do and how to carefully monitor the patient’s condition during the changes being made, including which tests are required.
Certain changes can be made in a clinic, while others require close monitoring. Sometimes, an overnight stay in a hospital or sleep lab is necessary to ensure the patient is sufficiently mature for the reduction of respiratory support.
There are various complications that are common in ventilated patients. These complications can be divided into several categories:
Complications related to the underlying disease: Often, the complications are not due to the ventilation itself, but rather despite it. In other words, they are caused by the underlying condition that led to the need for ventilation in the first place.
Complications following the tracheostomy: The main complications include:
Respiratory complications, sometimes resulting from improper treatment:
The prevailing approach for ventilated patients is that staying at home is the best option. This applies to the patient, the parents and family, and society as a whole. We analyze the impacts on the home and the family.
For the ventilated patient, home is the ideal place for quality of life. Both physically, as the patient receives precise and tailored care from parents or family members who are attuned to their needs through close familiarity, and emotionally, as the patient is surrounded by their natural, warm, and loving environment.
Staying at home with family increases the sense of security and enhances coping and recovery abilities.
Home care also prevents environmental infections, which greatly contributes to maintaining the patient’s health condition.
It should be noted that even patients who do not respond to environmental stimuli often show improvement in their well-being and even their medical condition when surrounded by a loving environment.
For parents and family, staying at home provides the satisfaction of doing the best for the patient and allows them to manage according to their usual routines as much as possible.
For society as a whole, from an economic perspective, this option requires fewer resources, and from an ethical standpoint, it creates a more inclusive and accepting society.
Emotionally, if there is still a difficult emotional feeling, it cannot be ignored, and it may be a barrier to returning the patient to their home. It is recommended to consult with appropriate professionals or families in similar situations to address the difficulty, understand its source, and try to find an appropriate solution. This is one of the reasons we established the ‘Parent to Parent’ program, which connects families who are dealing with similar challenges, both for those caring for a ventilated patient at home and in non-home settings.
It is a great responsibility to care for a ventilated patient at home. If the patient is relatively stable medically, there is no reason not to do so, and it is even recommended.
As long as the caregivers follow the medical instructions they received during training, and keep the attending doctor informed of any changes in the patient’s condition while at home, this is the ideal and sufficient level of responsibility for home care of the ventilated patient.
The same emergency situations and complications that may arise at home can also happen in the hospital. While parents may not have all the tools to handle every emergency, what is important is receiving proper guidance, ensuring that everything is understood, and feeling confident in daily care. It is also important to know when to consult with the doctor available to you 24/7, and when external medical intervention is needed, at which point immediate help should be called.
A ventilator is a life-support machine that helps the person connected to it breathe.
There are differences between ventilators used in intensive care units and home ventilators. The differences mainly focus on the volume levels and the ability to provide the required oxygen levels, if additional oxygen is needed.
Some individuals require the assistance of a ventilator for an extended period (chronic ventilation), even for many years. They may need ventilation for the entire day or only for part of it, such as during sleep.
Over time, patients adapt to the ventilator and are able to breathe comfortably with it. Providing respiratory support at home is a challenging task that requires a broad range of responses.
A patient dependent on ventilation needs a constant caregiver who is alert to their condition and skilled in caring for them. The caregiver can be a parent or an external person who has been trained and instructed for this role.
The medical team at the hospital is responsible for training the parents and family members in all aspects of care for the ventilated patient and the ventilator.
They ensure that at least two caregivers for each ventilated patient receive medical training, which includes tasks such as performing suctioning (removal of secretions), changing the tracheostomy tube, CPR, and becoming familiar with the ventilator. This also involves training from a respiratory technician who explains how to use the ventilator, the options available on the device, and the types of alarms it has.
The learning process includes practical training and real-life practice on the patient, both for performing suctioning and changing the tracheostomy tube. The more these actions are practiced, the greater the caregiver’s confidence.
Practicing changing the tracheostomy tube is one of the essential skills for saving the patient’s life in times of distress. It is recommended to do this under the guidance of the medical team at least a few times.
Before returning home, caregivers must complete an independent stay at the hospital (sometimes called a “trial night” or “trial day”) in an isolated room on the inpatient ward. During this stay, the parents or family members care for the patient on their own, but the medical team is present nearby for any assistance, if needed. This helps them gain the confidence to manage independently.
The return home also happens gradually. Initially, the patient returns home for just one day, and only after that can they be discharged from the hospital.
In general, in every hospital, the intensive care unit (ICU) team can train parents and family members. Usually, there is a specific professional responsible for this area.
In the case of a child, in most cases, the parents will undergo training at the ALYN Hospital, in the “Respiratory Rehabilitation” department
(here you can find the link to this department).
There, structured training is provided by professionals on how to care for the child, change the tracheostomy tube, perform CPR, follow procedures in case of emergency, and receive training from a respiratory technician on how to operate the ventilator, its various functions, and the types of alarms it has.
In addition, in this department, the child is treated in all aspects related to ventilation: ensuring that the ventilator parameters are accurate for the child, checking how well the child is adapting to the ventilation, and examining the condition of the tracheostomy opening—whether it is healing properly or if sutures are needed to close the opening more precisely. In the “Respiratory Rehabilitation” department, when appropriate, we try a weaning process from the ventilator and the possibility of disconnections for potential time periods, with everything measured and checked professionally.
At ALYN Hospital, they also provide professional para-medical treatments and guidance for parents on how to continue appropriate exercises at home and incorporate therapeutic principles into their daily routines.
While in the “Respiratory Rehabilitation” department, the nursing staff helps parents learn about the implications of the tracheostomy and ventilator in everyday actions, which may seem simple, and how to manage them correctly, such as showering, dressing, feeding, lying on the stomach, playing, and more.
In this way, the parents leave this place full of confidence in caring for the child and understanding their condition in all its aspects.
No! Never!
A person with a tracheostomy and/or who relies on chronic ventilation must have a constant, attentive caregiver who is fully trained in their care.
It is advisable to prepare in advance by training several people who can assist with care during times when you want to step out for a break or run errands.
Emergency situations and airway blockages do occur and may happen at the least expected times. A quick and correct response can prevent damage and save the patient’s life. However, it’s important to remember that a proper response is not possible when the caregiver is tired, asleep without an alert system that will wake them up immediately if needed, or when the caregiver is not paying enough attention to the patient’s condition.
Emergencies can happen anywhere, even in hospitals. And, almost ironically, they tend to occur in the most unexpected places and times…
It’s always important to stay calm, recall what you’ve learned, and call for help when necessary. It’s essential to be prepared for emergencies by practicing what you’ve learned, consulting the treating doctor about common issues and how to handle them, and organizing the necessary equipment (and emergency medications, if applicable) so that they are readily available for immediate use.
Since sound production occurs when air is exhaled through the vocal cords, the presence of a tracheostomy can interfere with speaking. Therefore, as a solution in some cases, a ‘speech valve’ may be used. It is important to consult with a doctor and a speech-language pathologist regarding its use.
Another option is to place fingers on the opening of the cannula as an alternative to the speech valve. However, this method is not suitable for everyone, and it is necessary to consult with the doctor or speech-language pathologist.
Some individuals are able to produce sound despite the tracheostomy, even without a ‘speech valve’ or closing the opening with their fingers. They learn to exert more force when exhaling in a way that allows air to escape around the cannula.
If the patient is unable to produce sound and cannot use the ‘speech valve,’ consult with a speech-language pathologist to explore alternative communication methods (sign language, communication boards, writing, computer writing using eye tracking, etc.).
In any case, those around the patient must develop the ability to recognize the communication signals the patient uses to express themselves, such as facial expressions, hand gestures, general body posture, and even pulse rate, which, when elevated, often indicates pain or discomfort, or alternatively, excitement or enthusiasm.
Even in cases where external ventilation is used, there is difficulty in speech production. The mask the patient wears over their face interferes with mouth movements and also makes it harder for others to hear their voice.
Special attention is required during the first period of using a ventilator and after a tracheostomy, when the patient may still attempt to express themselves using their vocal cords but is unable to be heard. Pay attention to all their attempts to express themselves and send the message that, even if the sound they try to produce is not audible, the environment understands their self-expression.
Gradually, the patient will learn to speak or express themselves in the clearest way possible, and the environment will learn to be attentive and responsive to their speech and unique communication signals.
In any case, it is important to always communicate with the patient as much as possible, just like with anyone else. Share with them what is happening, explain what you are about to do with or for them before each action. Prepare them for less pleasant actions (such as suctioning or changing the cannula). Remember that, even if they do not speak, they understand or at least feel. They deserve communication and connection with their environment as much as possible.
As part of the treatment package for a ventilated patient, they are also entitled to speech-language therapy to help them progress in speech and communication.
As a general rule, ventilation does not prevent eating through the mouth. However, being on a ventilator can interfere with the eating process. For example, the presence of a tracheostomy can make swallowing more difficult, and an external ventilator mask can interfere with mouth movements.
Over time, the patient learns to overcome these challenges. In any case, it is important to consult with a speech therapist and the doctor to receive guidance on proper feeding techniques.
As part of the care provided to the ventilated patient, they are also entitled to speech therapy to help improve their eating and swallowing abilities.
A ventilated patient requires a lot of equipment, whether a baby or an adult. This includes many medical devices: ventilator, monitor, humidifier, nebulizer, stationary and portable suction devices, feeding device (if needed), oxygen concentrator, and oxygen tanks (even if the patient doesn’t need them regularly, they are part of the basic equipment for emergencies or illness). There is also disposable equipment used for daily care that can easily fill several large boxes, as well as rehabilitation equipment (when needed), such as a hospital bed, wheelchair, standing frame, lifting device, bathing aids, and more.
All of this takes up a lot of space in the home, and much of it is needed on a daily basis, so it must be easily accessible and cannot be stored in an external warehouse.
Therefore, it is important to assess whether the home is suitable for housing all this equipment and whether it will lead to overcrowding that might hinder functionality.
Additionally, if the patient requires nursing care, the home should be assessed for accessibility. The doorways and hallways should be wide enough (at least 75 cm) to allow for a wheelchair to pass through. The bathroom or shower must also be adapted to the patient’s needs.
Another consideration is the accessibility of the building itself: it should be without stairs or at least have an elevator (keep in mind that the elevator may be problematic on Shabbat. Therefore, if you want to leave the house on Shabbat, this must be taken into account).
Even when the patient is not bedridden or when it is a small baby who only requires a regular stroller, it is highly recommended to find an accessible home if possible. All the medical equipment adds significant weight that makes climbing and descending stairs difficult. An accessible home will greatly ease your mobility.
אכן, לצאת מהבית עם מונשם זו לוגיסטיקה מורכבת, אך אפשרית.
בכדי לצאת באופן בטוח, יש להיערך אליה מראש בצורה מסודרת.
אפשר להיעזר ברשימה קבועה, ניתן גם
Indeed, leaving the house with a ventilated patient is complex logistics, but it is possible.
To leave safely, you need to prepare in an organized manner in advance.
You can use a regular checklist, and also prepare a bag containing most of the necessary items. Every time you return from such an outing, make sure to immediately replenish any missing equipment. It’s good to keep the bag available in case of an unplanned trip.
There are wheelchair models that can be adapted for necessary devices: a shelf for the ventilator and another device, a bag for the oxygen tank, and handles for other devices. In this way, each device has its designated place, and the wheelchair can carry most of the items the ventilated patient needs.
For an infant, make sure to purchase a large stroller that can accommodate all the necessary equipment. Be careful not to place heavy items on the back of the stroller, as this could cause it to tip over.
You can also use a trolley to place the equipment and devices while moving between the house and the vehicle.
It is important and recommended to learn how to move with the ventilated patient in the easiest and safest way possible, as long as the outings do not pose a risk to them (consult with the treating physician about this).
להכין מראש תיק המכיל את רוב הדברים ובכל פעם שחוזרים מיציאה שכזו, לדאוג מייד למלא חזרה את הציוד החסר. כדאי שהתיק יהיה זמין למקרה של יציאה בלתי מתוכננת.
ישנם דגמים של כסאות גלגלים שיכולים לעבור התאמה למכשירים הנצרכים: מדף למנשם ולמכשיר נוסף, תיק לבלון החמצן וידיות למכשירים נוספים. כך, לכל מכשיר יש מקום המיועד לו וכסא הגלגלים יכול לשאת את רוב הדברים להם המונשם זקוק.
במקרה של תינוק, שימו לב לרכוש עגלה גדולה היכולה להכיל את שלל הציוד הנצרך. היזהרו מהנחת דבר כבד בגב העגלה, מה שיכול לגרום לעגלה ליפול אחורנית.
ניתן להיעזר גם בעגלת משא בכדי להניח עליה את המכשירים והציוד במעבר בין הבית לרכב.
חשוב ומומלץ ללמוד להתנייד עם המונשם בצורה הטובה והקלה ביותר עד כמה שניתן, כמובן כל עוד היציאות אינן מהוות סכנה עבורו (יש להתייעץ לגבי כך עם הרופא המטפל).
In principle, it is possible, but under the appropriate conditions and only after consulting with the attending physician.
It is essential to be cautious of water entering both through the tracheostomy opening and around the cannula at the neck opening.
In suitable situations, a humidifying valve can be used on the cannula opening to reduce the likelihood of large amounts of water entering the cannula. However, this does not eliminate the need to monitor for water entry around the cannula at the neck opening.
In principle, yes, and it is even recommended, unless attending a setting could pose a risk due to road bumps or exposure to environmental infections.
If the child is suitable for a regular educational framework, the Ministry of Education is obligated to fund a dedicated assistant trained to care for the child.
In a rehabilitation educational setting, the medical responsibility lies with the nurse on site, and the child receives all necessary educational and para-medical care within the framework.
If attending an educational setting is not possible, there is an alternative for the home—an in-home caregiver with medical training, enabling the parents to work.
For infants (up to age 3), the program is called “Alternative Nursery” and is funded by the Ministry of Welfare.
For children (over age 3), the program is called “Home Education” and is funded by the Ministry of Education. Due to the “Compulsory Education Law,” every child over 3 must be enrolled in some educational institution.
In “Home Education” cases, the responsibility of the educational institution where the child is enrolled is to maintain contact with the parents, provide support, ensure continuity of care, offer professional guidance, mediate between the professional team at the institution and the caregivers at home, ensuring that the child receives all necessary educational and para-medical services.
In “Alternative Nursery”/ “Home Education,” para-medical treatments are provided through the health insurance fund. Vision therapy is the responsibility of the Ministry of Education.
For a child over 3, a “Partial Home Education” program can be arranged, where the child attends an educational setting a few days a week, and on the other days (those exceeding the number of days at the educational setting), “Home Education” is provided.
A ventilated child at home is a complex, multi-faceted challenge that has significant effects on the home, the couple, and the family as a whole.
The primary fact that cannot be ignored is that having a ventilated child creates high levels of stress. Stress over the child’s current condition, concern for the near and distant future, and stress from the overwhelming tasks required around the clock to care for them.
Additionally, the hours of care for the child are not limited to just the day. There are nighttime hours when care is also needed, if necessary. This can lead to parents suffering from sleep deprivation due to frequent awakenings.
The high stress, the immense workload, and broken sleep hours can impact the parents’ ability to work and earn a living.
The couple’s relationship can also be affected when there is no time to be together. Another challenge parents of a ventilated child face is the restriction and inability to be free to go out, especially together as a couple. Since the child requires constant supervision by a trained caregiver, the responsibility falls on the parents. If there is no one else (such as a foreign worker, relative, acquaintance, or volunteer) to help share the burden, at least one parent always has to stay home.
In addition to everything, the other children in the home may feel neglected when their parents are preoccupied with the ventilated child and neglect their own needs.
Despite all of this, no parent wants to give up on their child.
On the other hand, the presence of a ventilated child at home also has many benefits. When parents know they are doing the best they can for their child, they are at peace with themselves and more relaxed. Together, as a couple, they work on an important and shared task, which strengthens their relationship.
The other children in the house also benefit from having a sibling growing up with them. They develop a sensitivity to their surroundings and become more kind, tolerant, and stable. They learn to appreciate what they have, and their inner happiness grows.
And let’s not forget the ventilated child themselves, who undoubtedly receives the highest quality of life possible when at home.
So, despite all the challenges, this is undoubtedly the preferred choice.
The presence of an adult on a ventilator at home is even more complex than that of a child, and it depends on the family structure and the status of the individual on the ventilator. Is it one of the parents? Do their children live in the home? Are they young? Is the partner able to bear such a burden? Is the parent living with one of their children? Is there a foreign worker? Is the home accessible and large enough to accommodate all the necessary equipment? Is there a sufficient financial foundation to bear all the significant costs?
All these factors alter the picture. And it is certainly not simple. However, in many cases, it is possible and advisable.
Many of the points raised in the previous answer share common denominators. Each case should be discussed individually, and the available alternatives examined. As long as it is possible, the home is undoubtedly the ideal place.
If you need help, don’t be ashamed to ask for it. Whether it’s volunteer help or paid assistance. No price is too high for a helping hand. You can also check what our volunteer network can offer you.
Ensure sufficient sleep and make up for lost hours if necessary. Accumulated fatigue affects your performance, mood, and judgment, which can certainly impact your loved one.
Set aside time for relaxation and rest. Practice meditation and relaxation techniques. The constant stress you’re under increases stress hormones, which can accumulate and harm the body. So, it’s important to find time for physical and mental rest.
Check what rights you’re entitled to and make sure you’re receiving the maximum support. You can rely on the information provided here on the website nd the individual advice we offer through the ‘Hotline’.
At the same time, take a deep breath. It’s important to remember that over time, the level of stress decreases. The tasks become part of your routine and gradually become easier.
In conclusion, what truly affects the consequences of the choice is your attitude towards the challenge. And for the children, how parents address the issue directly impacts how they accept the reality. A positive outlook, a firm decision, and clarity on the path ahead are the guarantees for happiness at home.
In order for a ventilated patient to return home from the hospital, several criteria must be met:
■ The patient must be medically stable.
■ The family must be capable of caring for the ventilated patient at home, both psychosocially and financially. They must understand the patient’s medical condition, care needs, and the implications of home ventilation, and agree to the home hospitalization in writing.
■ The home must be adapted to the patient’s needs, organized, and able to accommodate all respiratory and nursing equipment.
■ The ventilation settings must work properly and be suitable for continued use at home.
■ The patient must be able to travel safely in a vehicle with all the necessary equipment.
■ At least two caregivers must undergo proper training for ventilator care, including emergency response and CPR (including chest compressions).
■ The health fund is responsible for supplying the home ventilator and any other necessary equipment, as well as providing all required disposable supplies.
■ The patient must use the ventilator provided by the health fund for at least two days under hospital supervision to ensure it is suitable for their needs.
■ There must be a clear plan for follow-up with the medical team.
■ The parents or guardians must feel confident in their ability to care for the patient independently at home.
These conditions for returning a ventilated patient home are detailed in the Ministry of Health’s director general’s circular.
The health insurance fund is responsible for providing all the necessary medical equipment for the ventilated patient. The Ministry of Health’s clinical guidelines recommend the following list of devices:
■ Ventilator
■ Backup battery for the ventilator (fully charged)
■ Manual resuscitation bag (ambu)
■ Pulse oximeter monitor for measuring blood oxygen saturation and pulse rate
■ Suction machine (stationary and portable) for aspirating secretions
■ Humidifier (humidifier) for the ventilator, as needed
■ Nebulizer or IPPV device, as needed
If a tracheostomy is present, an additional backup tracheostomy and a smaller one should be readily available.
In the case of external ventilation, a suitable mask and a backup mask are needed.
Additionally, all consumable and disposable equipment will be provided.
There may be a need for additional equipment depending on the patient’s associated medical conditions (such as a feeding device, glucometer, nebulizer, etc.).
Ensure to have an emergency kit kept within reach, containing necessary items such as a backup tracheostomy, ambu, flashlight, and suction tubes.
Furthermore, assistive devices will be provided based on functional status (wheelchair, walker, bathing aids, lift) and, if necessary, a pressure ulcer prevention mattress and a nursing bed.
Consult with your medical team about the required equipment and the supply you need.
The list of required medical devices is detailed in the Ministry of Health’s director-general’s circular.
Patients with a home ventilator require a medical and therapeutic team to accompany them during home hospitalization.
The idea is to provide a tailored care framework that ensures as full treatment as possible at home.
The team will include a home doctor who visits at least twice a month and is available by phone 24/7 for any emergency consultation regarding respiratory issues, a home nurse who visits at least twice a month, and various therapists based on the required fields: physiotherapy, occupational therapy, and speech therapy, who visit once a week (or as needed).
Additionally, the medical service will include a dietitian and a social worker from the health fund who will stay in contact with you.
Furthermore, once a month, a respiratory technician will visit to monitor the maintenance and care of the respiratory equipment.
The goal of everyone involved is for the patient to succeed, achieve everything they are capable of, and adjust to life alongside ventilation.
Parents and guardians are involved in decision-making, and all information is transparently shared with them.
In many cases, it is recommended to hire a caregiver to assist with the ongoing care. You can hire a foreign worker, an Israeli worker, or a volunteer. This is important because a home ventilated patient with invasive ventilation requires the continuous presence of a skilled and alert caregiver at all times.
Before a caregiver is left alone to supervise the ventilator-dependent patient, they must undergo the same training that the parents and family members have received: performing suction and tracheostomy tube changes, understanding the ventilator, and proficiency with other associated equipment. The caregiver should be familiar with all aspects of ventilator care and also receive training in CPR.
Each ventilator-dependent patient is entitled to receive authorization to employ a foreign worker from the Population and Immigration Authority, and even to hire two workers to provide 24-hour supervision. Of course, the necessary employment criteria and conditions must be met.
A fully ventilated patient is eligible for an increased allowance from the National Insurance Institute, which allows for financing the required assistance.
The home doctor, home nurse, and equipment supply company staff will also be available to answer any questions regarding the patient or equipment and provide further guidance if needed.
The health fund fully finances all treatments, medications (except those not included in the fund’s basket), and the medical and disposable equipment needed for the ventilated patient. This also includes regular paramedical treatments.
Additionally, the health fund is responsible for financing the transportation of the ventilated patient by ambulance to the hospital or for medical check-ups and returning home.
The health fund should also finance the training of additional caregivers if necessary.
The charges imposed on health funds are detailed in the Ministry of Health’s Director-General’s circular. A link to download the circular is attached at the bottom of this page.
There are also additional rights that do not specifically apply to ventilated patients. Here, you can check all the rights you are entitled to through the health funds.
There are various rights in different areas that every ventilated patient is entitled to.
These include rights through National Insurance for disability benefits, rights through the health fund arrangements, and rights through various government offices.
For this purpose, we have prepared a full detailed list of the rights here on the website.
The ASTRAL portable ventilator was developed in 2014 by an Australian company and was a leader in terms of weight, portability, and mobility. It even won a prestigious international design award. Its use in Israel began in 2018. Before that, ventilators were much larger, heavier, and more cumbersome.
The use of medical devices on Shabbat raises many halachic questions. As a general rule, ventilated patients are defined in halachic terms as “a sick person in danger,” and therefore any action done for them to prevent danger or to strengthen their body to cope with the illness is permitted.
However, there are many specific halachic details that are important to be aware of, so it is recommended to consult with a rabbi qualified in this area. Personal consultations can be made through the ‘Hotline’.
Currently, the organization is working on publishing a Torah book that addresses all aspects of using medical devices on Shabbat. This book is written by a parent of a ventilated child who serves as a “morah tzedek” and has discussed the issue with prominent halachic authorities who support his rulings in these complex matters.
Oxygen passing through a ventilator loses some of its effectiveness. Even portable oxygen concentrators are less effective in terms of oxygen production.
It is possible to connect the oxygen directly to the ventilator tubing, thus bypassing the ventilator. Of course, it is important to consult with the treating physician regarding the proper way to use oxygen.
The size of the cylinder indicates how many liters of oxygen it should contain (3 liters / 10 liters / 15 liters). The oxygen percentage you set indicates how many liters of oxygen are used from the cylinder per hour. For example, if you set the percentage to 2, two liters will be used from the cylinder after one hour. This means that if you have a 3-liter cylinder, it will be emptied after just an hour and a half of using oxygen at a setting of 2.
The gauge indicating the remaining amount in the cylinder shows approximately how much is still left. However, it cannot be relied on 100%. When the gauge approaches the red color, it is recommended to refill the cylinder or request a replacement.
According to the protocol, it is recommended to replace the cannula once a month. However, some individuals experience excessive discharge around the cannula. In such cases, it is advisable to replace the cannula more frequently to prevent the development of infections around it.
Cannula replacement may cause strong coughing, so if the replacement is planned (and not in an emergency situation requiring immediate replacement), to avoid the risk of vomiting or aspiration, it is recommended to schedule the replacement away from mealtime, either before the meal or about two hours after it.
It is important to keep the airways clear by suctioning secretions (suction) when necessary. Using the ventilator device during suction can help bring the mucus upwards, especially in those who cannot cough or have reduced coughing ability.
Additionally, daily respiratory physiotherapy exercises are important, both manually and especially with a ventilator – this helps expand the lung alveoli and ventilate them.
Frequent position changes, moving as much as possible according to ability, and standing when possible all help in ensuring that any fluids that accumulate in the lungs move to different areas and do not remain in one place, thus preventing inflammation.
Ensure adequate fluid intake. Fluids are very important for lung function.
Aspiration (the regurgitation of stomach contents into the airways), even if subtle, is a common cause of respiratory damage and pneumonia. Pay attention to this issue and address it as much as possible. Consultation with a gastroenterologist is recommended.
In the case of pneumonia, it is recommended to lie mainly on the side of the healthier lung, which helps the affected lung receive more air volume.
Of course, it is important to consult with the treating physician and physiotherapist for personalized guidance.
There are several red flags that may indicate the development of an illness in the ventilated patient, including:
Changes in secretions – An increase in the amount of secretions and the need for more frequent suctioning, changes in secretion color (yellow, green, reddish, or brown), or thicker secretions, can sometimes indicate the development of infection or inflammation in the respiratory tract.
Persistent respiratory difficulty – A sinking of the chest muscles between the ribs can indicate increased respiratory effort. Wheezing or rapid breathing above the average rate can also signal the development of a respiratory illness.
(Note that localized respiratory difficulty may also indicate an obstruction or dislodgement of the cannula).
Decreased oxygen saturation and increased oxygen consumption – This indicates a problem with the exchange of oxygen and carbon dioxide in the lungs and blood. Decreased saturation levels can also manifest in changes to skin color, such as cyanosis around the mouth and eyes.
(Decreased saturation can also indicate an obstruction or dislodgement of the cannula).
Apathy – Changes in consciousness, confusion, withdrawal, or apathy indicate an underlying illness.
Fever – A deviation of more than 2°C from the average temperature (36.5°C), indicates the development of an infection in the body. The deviation can be upwards (high fever) or downwards (hypothermia).
[Note that some ventilated patients consistently have low body temperature (hypothermia) and require artificial warming (such as a heating blanket) to maintain a normal body temperature. In such children, deviations from their baseline temperature may indicate infection, even if within the normal range for healthy individuals].
Pulse – An elevated heart rate above average can result from a rise in temperature and infection. A low heart rate below average can be due to hypothermia.
Low pulse, hypothermia, and decreased consciousness are life-threatening conditions!
Of course, any change in the patient’s condition should be reported to the treating physician for further assessment and appropriate response.
Yes, it is possible and even recommended, of course, in the absence of medical contraindications.
For the ventilated patient, a trip and time spent outdoors or meeting with other people provide refreshment, variety, a sense of value, and equality. For the parents or family members, outings offer opportunities for release, a change of scenery, meeting others, and strengthening social ties. Give yourself and your child these important opportunities. Although every such outing requires logistics and complex organization, do not give up. The benefit is well worth the investment!
What is important to remember to bring with us?
Important tips for long trips:
Where does the word ‘pium’ (tracheotomy) come from?
The word ‘pium’ is derived from the Aramaic word “פום” (pum), which means “mouth.” In Hebrew, for example, we use the word “pumit” (פומית) to refer to the part of the telephone receiver that is used for speaking (i.e., the part located near our mouth). “Pium kane” (tracheotomy) means creating an opening in the trachea – essentially forming a ‘mouth’ in it. We thank the Hebrew Academy of the Hebrew Language for its assistance.
A ventilator connected via a mask to the nose and sometimes also to the mouth, or through a direct connection to the trachea via an endotracheal tube or tracheostomy, operating with positive pressure – by pushing air into the patient’s airways.
A device that measures blood oxygen saturation levels. Most devices also measure heart rate (a device with this feature is called a pulse oximeter).
A surgical procedure in which a hole is made in the neck, and a tube is inserted into the trachea to connect it to external air
A term for a tube inserted into the trachea that allows both connection to a ventilator and airflow bypassing the upper airways.
A sensor that connects the oximeter/monitor to the patient. Most sensors come in the form of a sticker or adhesive that attaches to the finger or wrist or ankle.
The process of suctioning liquid secretions – saliva and mucus – from the airways, the cannula, the nose, or the mouth.
A manual ventilation device that creates positive pressure during ventilation when the Ambu bag is squeezed. The Ambu can be connected to the patient using a mask that covers the mouth and nose or through a connector that attaches directly to the tracheostomy.
When solids, liquids, or saliva enter the trachea instead of the esophagus.
A thin, flexible tube that connects to the suction device. Its purpose is to suction mucus from the tracheostomy, mouth, and nose.
A filter that connects to the ventilator tube, designed to capture moisture expelled from the airways, thus enriching the air returning to the trachea with moisture (the filter is used when there is no connection to a humidifier).
A device that connects to the ventilator tube, containing a water reservoir and a plate that heats the water. The light steam rising from the water enriches the air passing through the ventilator tube towards the patient with moisture.
The tracheostomy tube coming out of place. This can either be involuntary, requiring immediate re-insertion, or planned by a doctor when it is no longer needed.
A thin assistive rod that enters the tracheostomy tube and provides it with some rigidity. It is used only during the insertion of the cannula into the tracheostomy opening (it must be removed immediately after the insertion is complete, as it completely blocks the airflow entry from the tracheostomy while inside!).
A sterile saline solution used during suctioning to soften the mucus.
Fluids that are produced in the lungs and trachea, expelled during coughing or removed using suction.
A unidirectional valve that connects to the tracheostomy, causing inhaled air to exit around the tracheostomy and then through the vocal cords, instead of exiting through the tracheostomy itself. This way, the airflow through the vocal cords produces sound.
