When people hear the word “ventilator”, the first thing that comes to mind is often an ICU hospital room, complete with a disproportionate number of medical staff, a spider web of tubes and wires, and an eerie silence punctured by beeping machines. But for quite a few families, things like vents and trachs are de rigueur, part and parcel of daily life with a child with special needs.
Respiratory challenges are sometimes an isolated issue, and at other times, are just one symptom of a more complex condition. We connected with multiple parents and caregivers for content on this loaded topic, and while we’ll attempt to address the basics here, bear in mind, as always, that each child is a world of their own, with their own unique (cuteness, wonderful qualities, and) needs.
All advice below should be taken as food for thought and inspiration for questions to ask your child’s doctor, rather than experiments to try at home:)
For Dummies
You know that mother who knows so much about her child’s condition and medical care, she could practically get a PhD on the subject? It can be almost intimidating when you hear her going on and on, sprouting wisdom born from years of hands-on experience. But once upon a time, this parent was new to this medical world, afraid, lost, and completely overwhelmed by facts, terminology, equipment… Everything.
If you find yourself at that point now, where you’re hearing from doctors (and possibly also well-meaning friends, family, and coworkers) about respiratory treatments and ventilation, maybe even a trach, and you wish you knew the basics, read on for some beginner’s education. Everyone’s gotta start somewhere!
The information below is for educational purposes only. Please ask all medical questions to your child’s primary care physician.
What is a ventilator?
A ventilator (simply called a “vent” by many) is a machine that mechanically breathes for a patient who needs help breathing for various reasons, whether there’s a pulmonological (lung) issue, muscular problem, or something else.
Vents can be either non-invasive or invasive.
Non-invasive vents (like a CPAP/BiPAP machine) are connected to the patient via a face mask.
Invasive vents are connected to the patient either via intubation (when a tube is inserted through the patient’s mouth and into their trachea/windpipe, often done with patients in the ICU) or via a tracheostomy, more commonly called by the simplified term “trach” (when a stoma – a hole – is surgically created in the patient’s neck and a tube called a cannula is inserted), and the vent tube is placed directly over the cannula.
Some patients may need a trach for more anatomical reasons, for example, if their upper airway is somehow obstructed, and they might be able to breathe through the trach itself without needing ventilation at all.
Other patients don’t need the full breathing support of a ventilator, but still depend on oxygen, either via a face mask, a nasal cannula (tube through the nose), or a trach. A patient who needs a lot of support might have oxygen in addition to ventilation.
That was a bit of an info-overload…
You got it! New information takes time until its processed.
One mother just shared with us how overwhelmed she was at the beginning, learning a whole new lexicon of terms and dealing with doctors, equipment, and treatments for her child.
Today, her child still has a trach and needs respiratory support, but it’s become a part of regular life and routine. Running a home is a balancing act for everyone, and she has to be on top of this child’s care along with everything else… But she does it every single day.
This wonderful mother would like to encourage other mothers in the same boat that with the passage of time and the ability to accept the situation, it DOES become possible, and it only gets easier as time goes on.
Keep in mind that while for a lot of children, being dependent on respiratory support comes with a host of other medical complications which require constant vigil and full-time care on the part of the parents, many others need the support for an isolated reason and are otherwise actually quite medically stable.
The vent or trach in and of itself does not say much about a child’s medical state, and while trach care does involve a learning curve, not always does it mean the end of the world:)
From fellow Parents
Before implementing anything you read in a twice-monthly newsletter from even a reputable organization, you should check with your child’s doctor. Obviously. But we wanted to share, off the record, some advice that other parents of children on trachs think you should hear:
Don't jump the gun
We all want our children to be independent. All intervention, education, and encouragement we provide them with is with the goal of independence in mind, and breathing is no exception. A child who can breathe on their own is unquestionably at a higher state of independence than one who needs to depend on machines to do the work for them.
Though vent-weaning is a goal for many, one parent cautions, based on a personal negative experience, not to be too hasty. Independence is important, but health and safety is Number One. If a child needs a vent in order to breathe properly, then that is precisely what Hashem brought vents into this world for — use it! Of course, we all hope it won’t be forever, and with medical supervision, one can work on slowly weaning off the vent.
All children who are medically fragile have their ups and downs, and just because today they are (thankfully!) breathing independently, tomorrow they might need some respiratory support via their trach. Surgically creating a new stoma after the first one’s been closed is a more difficult procedure and recovery the second time around. This parent would like to remind others to thank Hashem that the child is breathing independently for now — and take it slow.
Ins and Outs
The official way to suction is by first inserting the catheter and only suctioning on the way back out. (For the uninitiated, suctioning is a process during which the caretaker inserts a skinny catheter which is attached to a suction machine into the patient’s trach tube — or mouth — which sucks up the extra mucus that’s blocking the patient’s airways.)
One mother shared with us that she finds it much more effective to suction on the way in, as she’s inserting the catheter, as otherwise, the catheter pushes the mucus right back down into the trachea. The generally accepted amount of time it should take to suction is no more than 10 seconds. Rather than the process taking longer due to suctioning on the way in, this mother finds that it takes even shorter because there’s less stuff left to suck up on the way back out
A few more simple hacks from moms:
Smaller split gauzes are neater. You don’t need to stay with those massive 4x4s from the hospital — I switched to 2x2s, which are just as effective but look nicer.
You can use a regular good brand of diaper rash cream for stoma irritation — we love Calmoseptine!
Making use of machines that can help clear mucus, such as cough assist or chest vest, can help reduce the need to suction so frequently.
My child used to suddenly point his chin downward while I was trying to change his trach tube, until we figured out that someone can stand behind him with a toy to distract him, and that helped him extend his neck enough to do the change.
Hospital Stays
If you have a child who needs respiratory support, you might consider yourself a (proud?) member of the hospital frequent flyer club. (If there isn’t such a club yet in existence, we should definitely make one.) One of the (many, many) frustrating aspects of landing in the hospital time and again is having to explain YET AGAIN to the emergency room personnel about each and every detail of your child’s condition, equipment, medications, and so forth.
One mother shared an incredible resource that she put together herself: A cover sheet with all of her child’s medical information. It includes not just the diagnoses and allergies that you find on a typical medical bracelet, but a detailed list of all care instructions related to the child’s vent, g-tube, medications, and so forth. Having all of the instructions on hand and clearly written up made a world of a difference. The hospital loved it so much that they asked her if they could share it with other families!
We’ve attached the sample here which was shared by this mother; feel free to print for your use or copy this idea to make your own personalized version!
Support
Mi k’amcha Yisrael! Klal Yisrael excels in the art of giving, and children on vents or trachs are no exception. If you have a child in need of respiratory support and are looking to connect with others and receive practical and emotional support, you have where to turn to.
Lev Aim is a wonderful support organization for mothers of children who are medically fragile, including children on vents or trachs. They offer get-togethers, multiple chats, and also have volunteers available in Boro Park, Flatbush, Williamsburg, Monsey, Monroe, and Lakewood to provide care for your child while you take a well-deserved break. Lev Aim can be reached at 845-422-2686.
Looking to network with other parents for practical advice and supplies? There’s a great texting group for this — reach out to 718-637-1863 to join.
When looking for referrals and guidance, as always, feel free to reach out to Ezreinu at 718-750-1010.
With much appreciation to the Lev Aim staff as well as all the mothers and caregivers who shared information with us for this newsletter!
Mr. Blum had called Ezreinu’s office for a referral, and in the course of the conversation, he mentioned that purchases for his child with special needs can get expensive. The support specialist who was assisting him told him about reimbursement through FSS, what it can be used for, and how to obtain it. Mr. Blum had never heard of this option before and was very grateful that he’d be able to get reimbursed for some of these expenses from now on. 🟦
After a long wait, the Gruens were finally informed that their child was a candidate for a unique procedure which could help alleviate some of the symptoms caused by his medical condition. Apprehensive about the path forward and in need of support, the family reached out to Ezreinu and asked to be put in touch with a family who had a child go through this same procedure. Ezreinu successfully connected the Gruens with someone who’d done this procedure and was happy to be a source of support for them. 🟦
iIdentifying details have been changed to protect client confidentiality.
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