Hi it’s Patrik Hutzel from INTENSIVE CARE AT HOME where we provide tailor made solutions for long-term ventilated Adults & Children with Tracheostomies and where we also provide tailor made solutions for hospitals and Intensive Care Units whilst providing quality services for long-term ventilated patients and medically complex patients at home, including home TPN.
In last week’s blog, I talked about,
You can check out last week’s blog by clicking on the link below this video:
In today’s blog post, I want to answer a question from one of our clients and the question today is
My 18-Month Old Girl is Ventilated with a Tracheostomy in PICU, Can She Leave with Intensive Care at Home? Live Stream!
Wherever you are, welcome to another live stream of Intensive Care at Home.
Today’s live stream is about a question that we have from a prospective client. And the prospective client asks, “My 18-month old girl is ventilated with a tracheostomy and she’s been in the pediatric ICU pretty much since birth. Can she leave ICU or the pediatric ICU with Intensive Care at Home?”
That’s what we want to dive right in today, and I want to answer this question as part of a case study where we worked with toddlers before at home with ventilation and tracheostomy. So that I can illustrate this to you in a case study. So that you know what’s possible and how we can help you if you have an 18-month old girl or boy in the pediatric ICU, how we can help you get them home with Intensive Care at Home.
Before I go into today’s presentation and case study, let me quickly do some housekeeping. If you have any questions regarding today’s topic please type them into the chat pad. You can also call in, live into the show at the end of the presentation. I’ll give you the numbers that you can call in at the end of the presentation and I will answer all of your questions.
Now, you may want to know before we get into today’s presentation, what makes me qualified to talk about this topic? I’m a critical care nurse with over 20 years of ICU and pediatric ICU nursing experience in three different countries. I am the founder and director of Intensive Care at Home where we provide a genuine alternative for long-term intensive care patients, including adults and children. And we help families taking their loved ones’ home from intensive care. And we also help intensive care units emptying their very highly sought after ICU beds. And that creates a win-win. We also therefore cut the cost of an ICU bed by around 50%. Again, we are all about creating win-win situations.
When I worked in intensive care, I have worked as a nurse unit manager in intensive care for over five years. We are also consulting and advocating for families in intensive care all over the world as part of our Intensive Care Hotline consulting and advocacy service, it ties right in with our Intensive Care at Home service. One service supports the other, where we help families all around the world.
I’ve been doing these YouTube live streams quite regularly. I usually do them once a week. Usually do them on a Sunday morning, 10:30 AM Sydney, Melbourne time in Australia, which is 8:30 PM Eastern Standard Time on the East Coast in America. Eastern Standard Time Boston, New York, Philadelphia time, which is 5:30 PM on a Saturday afternoon, Pacific Time, LA, San Francisco.
So I want to welcome you once again to the live stream and let’s dive into today’s topic. Where a prospect asks, “My 18-month old girl is ventilated with a tracheostomy in the pediatric ICU, can she leave ICU with Intensive Care at Home?”
This is quite a common situation that we encounter and we have taken a number of 18-month old boys and girls home. After a lengthy stay initially in the neonatal ICU, then they move on to the pediatric ICUs as they get a little bit older, but then it’s time for them to go home. And I argue we could take home those kids much earlier, much quicker, and there’s no need for them to stay in the pediatric ICU for 18 months. With our service, Intensive Care at Home, we can send those kids home probably after a few months because we’ve got the skills, we’ve got the knowledge, we’ve got the accreditation, and we’ve got the staff to make this happen. We practice according to the mechanical home ventilation guidelines, we’re working around with mechanical home ventilation guidelines, and then that is research and evidence-based. I will talk about the mechanical home ventilation guidelines in particular as part of this presentation today.
So let’s look at a case study where we worked with the toddler at home. Here’s the situation, a toddler, an ex-prem baby had difficulties weaning from CPAP, which led to further investigations at the time revealing tracheomalacia, tracheobronchomegaly requiring a tracheostomy. Overnight CPAP was required with the tracheostomy. And then other premedical history of this particular toddler, which was our client at the time was a respiratory illness, had blocked tracheostomy at times, obviously needed the CPAP, had bradycardia, had seizures as well. That was part of the medical history of the client that led to the tracheostomy and the ventilation in the first place. There were also difficulties with feeding and vomiting, nasogastric feeds, and that particular client went home with the nasogastric tube. Like many toddlers do, they pull out their nasogastric tubes, but we were able to reinsert the tube at home quite frequently whenever the little girl was pulling out her tube, we reinserted the nasogastric tube. And we were just doing the pH test, making sure it’s in the right position, obviously chest auscultation as well, making sure that it’s in the right place.
The initial assessment of this toddler, at the time also showed global developmental delay characterized by delays in cross and fine motor skills, communication and cognition compared to children of a similar age. This can be explained by both her prematurity and prolonged hospital stay due to her other complex medical and surgical issues at the time.
So the main reason again, for the tracheostomy was tracheomalacia, tracheobronchomegaly. She then had a Bivona FlexTend size 4 inserted. We were using a size 8 suction catheter. We wouldn’t suction more than nine centimeters deep.
But when the family first inquired to us about our service, we did not hesitate in taking them home because once again, we do have the skills, the expertise, the accreditation, and the staff to look after those kids at home 24 hours a day. This was a case at the time in Melbourne, here in Australia. And if you happen to be in Australia, Melbourne, Sydney, Brisbane, Perth, Adelaide, we can help you there. If you are overseas, if you’re watching this, if you’re in the United States, you should definitely reach out to us on one of the numbers on the top of our website at intensivecareathome.com and we can set you up with some people in America as well. We are building our network so that we can help people all over the world, wherever we can.
But for our viewers in Australia you should definitely contact us as quickly as possible. There’s NDIS (National Disability Insurance Scheme) funding for you waiting. We can help you with all of that, how to get NDIS funding for 24-hour nursing care, because if you’re 18-month old, girl/boy, has a tracheostomy and/or is ventilated, you need 24-hour nursing care to keep your child safely at home and not have them bounce back into ICU all the time or even worse, die.
I don’t want to be fear-mongering here but the reality is that unfortunately, we have also seen that if there is no 24-hour nursing care for a tracheostomy child or for an adult for that case or for a ventilated client, people unfortunately die if there’s no 24-hour care. The medical emergencies that happen when there’s no one there, they can’t be managed by a lay person, no matter how much training the hospital may give parents or support workers, it does not replicate the skill of an intensive care nurse who has seen and managed many emergencies in their lifetime in ICU or at home. That is what is required if there’s a medical emergency at home, like tracheostomy blockage, God forbid, cardiac arrest. We’ve seen all of that, and we know that an intensive care nurse on a shift can save that life. Whereas a family member or a support worker simply cannot save a life and we have evidence to back up what we are saying here.
Unfortunately, whenever we had clients, when the NDIS or other funding bodies, don’t fund 24- hour nursing care for a ventilated/tracheostomy client, we have lost clients during the time when we were not there due to lack of funding and it’s a disgrace. And you don’t want to put your child or your family member in that situation. Again, we can help you with the advocacy for funding through the NDIS but most clients now with ventilation and tracheostomy get 24-hour nursing care through the NDIS. And then we can start working on putting a roster together for you.
How does it work going home? How does it work with equipment as well? So for example in this situation, we’ll need a ventilator. You will need spare tracheostomy tubes. You will need usually for kids half a size smaller. So, if it’s a size 4 tracheostomy then you need a size 3. You need a size 4, but you also need one size smaller in case a tracheostomy comes out and you can’t get the size 4 in. You need to use one size smaller, most important thing you need to achieve in a situation like when the tracheostomy comes out, put it back in and if it’s a half a size smaller, it’s better than having no tracheostomy in. Again, this is where the skill of an intensive care nurse or a pediatric intensive care nurse when it comes to emergency management in a home care setting.
So it needs to be well thought through, it needs to be planned through, the staffing needs to be in place, the equipment needs to be in place. Again, you need a ventilator, you need a backup ventilator, you need the circuits to the ventilator. You need a humidifier especially overnight. During the daytime, your child might be able to breathe with an HME filter, also known as a Swedish nose. It really depends on has your child been weaned off the ventilator already? Are they still ventilator dependent? But again, we can help you with all of that also when it comes to ventilator weaning at home. We’ve done that with the kids as well. You will need suction machine, you need a backup suction machine, you need the suction catheters. You need the right suction catheters in particular, as I said, size 4 tracheostomy, you need a size 8 suction catheter. For size 3.5 tracheostomy, you need a size 7 suction catheter.
So, you probably need a Yankauer suction catheter as well to clean the mouth. You need a nebulizer machine. A lot of those kids need normal saline nebulizers to keep the tracheostomy and the lungs moist because the nose is bypassed. Normally when people breathe through the nose, air is getting humidified just by breathing in through the nose. If people have a tracheostomy that natural humidifier is bypassed, therefore the humidified oxygen or the nebulizer will humidify the air that goes into the lungs. It’s very important to do that otherwise secretions might dry up. Dry secretions will block the tracheostomy that could lead to a life threatening situation.
So you can already see that devil is in the detail when it comes to managing someone at home on a tracheostomy, or on a ventilator. We have so many families coming to us saying, “Oh, I’ve got my loved one in ICU with a tracheostomy or with ventilator and tracheostomy or just with BiPAP ventilation and no tracheostomy. Can you train me to take my loved one home?” And I said, “No, I can’t train you because we exclusively employ intensive care nurses with a minimum of two years ICU or pediatric ICU experience. Most of them also have a post-graduate critical care or pediatric critical care certificate or diploma which gives them a really high level of skill.”
You can’t just train someone on a couple of sessions, a family member, or a support worker to look after someone that has intensive care needs. That takes years of training. If you do that, that is fraught with danger to the point where people have died because there are no intensive care nurses present when it comes to medical emergencies and that is simply, in my eyes, it’s almost like a crime because it could cost lives and it has cost lives.
We are constantly advocating and educating our environment about our service. While it’s the safest option compared to any other alternative, including the intensive care environment because in intensive care, you’re prone to infections, whereas at home it’s a clean environment.
If you have your child in intensive care there’s too many other bugs, too many other infections. And as you probably would’ve seen in ICU already, your child ends up with all sorts of infections and that’s due to the ICU environment where there are many sick kids. Whereas at home, it’s a much cleaner environment, generally speaking people at home are healthy, you don’t pass on any other bugs to your child. And it just keeps them healthy with the help of our intensive care nurses, with the help of our team and so forth.
Now, in a situation like that when you take your girl or your boy home, when they’re 18 months old again, I argue we could take them home even after eight months, 12 months at the latest. Sometimes it may be even earlier because, again, we practice Intensive Care at Home, according to the mechanical home ventilation guidelines. I’ll put a link below the video to the guidelines and you will see that in the guidelines it clearly demands that you can take patients home on ventilation with tracheostomy if they’re looked after 24 hours a day with an intensive care nurse with a minimum of two years’ intensive care experience.
Now, our average experience on our books is probably more around, 8 to 10 years ICU experience. We have a lot of senior staff on our books that have worked with us for a long time, that have worked in intensive care or in pediatric intensive care for a long time. We have the skills and the expertise to predictably, and I think the word predictably is so important, keep your family member out of ICU because you might be wondering, oh, what if you take them home and they bounce back? Well, that’s exactly our job to not keep them bounced back. We liaise with doctors, we liaise with the medical team, and we liaise with them 24 hours a day if need be.
Next, what else can happen at home that needs troubleshooting, that needs a skill of an intensive care nurse? We talked about equipment, sorry, I should have gone down that list. I haven’t completed the list I talked about. Two ventilators. I talked about tracheostomy tubes. I talked about suction catheters. I talked about suction machines. I talked about nebulizers. I need to talk about an Ambu bag or a resuscitation bag, face masks, Guedel airways, tracheostomy dilators is also part of the emergency equipment to monitor, to monitor heart rate and oxygen saturation, a thermometer to monitor temperature.
What else is important at home? Preventing chest infections, again, that happens just by simply listening to the chest, making sure that proper hand hygiene and proper infection control is carried out on a shift by shift basis. You need to make sure that there are no blocked tracheostomies. I talked about humidified oxygen. I talked about humidified nebulizers, whether that’s saline nebulizer sometimes they might need Ventolin or Atrovent nebulizers as well. Again, that is very, very important to keep monitoring that on a day by day basis.
Now, next. You obviously need to watch out for decannulation because kids can be very quick in ripping out their tracheostomy, and that could very quickly lead to a medical emergency. Again, we’ve seen that, we’ve done that many times. That’s what we are the experts in doing, managing, putting tracheostomies back in. That needs to happen within seconds because otherwise this could lead to a medical emergency.
Now, what else can happen? Ventilator can break down or can stop working. Again, you need to know what to do because you can’t have your child without a ventilator if they need the ventilation. Again, it’s about troubleshooting, it’s about being used to dealing with such, what can be, very stressful situations. I talked about nasogastric tube troubleshooting or issues with feeding, vomiting, but also if a child can take out that tracheostomy tube and they can, they can also take out the nasogastric tube. Which is what I mentioned before, that if it does happen, we can put them back in, check the pH, no need for a chest x-ray, auscultate, take vital signs and so forth. If there’s issues with vomiting, for example maybe the kids are getting a little bit of ondansetron or a little bit of Maxolon. These are all things that can be managed and coordinated with the medical team.
Next, this particular child that I’m referring to today also had seizures. So again, usually those kids are on a seizure management plan. They’re usually on a baseline of Keppra or phenytoin. Then if it comes to tonic-clonic seizures they’re getting often, according to a seizure management plan, some diazepam, some midazolam, often either through the nasogastric tube or sometimes intranasally. Sometimes they might have a port or a PICC line, so it can be given intravenously, but most of the time it’s through the PICC or intranasally.
What else? You got to watch the color of the sputum, what comes out from the tracheostomy, again to watch out for respiratory illness, chest infections. You got to watch for the frequency of suction. Generally speaking, the more you suction, the more secretions you stimulate. And that’s not very pleasant for the child for you to watch if the child keeps coughing and coughing and potentially goes into coughing fit. That could increase work of breathing, it could increase discomfort, and you just don’t want that for your child or for anyone. You need to look at baseline assessments such as normal breathing rate which is around, for an 18-month old toddler, 30 to 50 breaths per minute. Oxygen saturation should be above 95% on room air, but then again, sometimes kids might need a little bit of oxygen. They might need an oxygen cylinder, oxygen concentrator. Generally speaking, you shouldn’t need to suction more than every 30 minutes during the day, minimally overnight. If the color of the sputum changes we send it for a sputum sample and see whether there’s any bacteria growing, whether your girl needs antibiotics.
What you can do as well if oxygen saturation drops, suctioning would probably be the first action, increase oxygen, listen to the chest maybe. The child needs a chest x-ray, needs some bloods taken, and needs a baseline assessment. We can do all of that by either working with my home GP or helping you or helping the child just to present to the emergency department or emergency room, get a baseline assessment, and then go back home. Sometimes on IV antibiotics if they have a PICC line or a port. IV antibiotics is no issue from our end to do that at home.
Also, again, that’s when it comes to the tracheostomy, when it comes to troubleshooting blocked tracheostomy. You never want to come to the point where a tracheotomy’s blocked, you definitely don’t, but that’s again where the skill comes in of an intensive care nurse 24 hours a day. Making sure that it’s not happening in the first place by listening to the chest, auscultating, checking regular vital signs, oxygen saturation, inspecting the tracheostomy. If your child is on a ventilator, assessing tidal volumes, because one of the first signs that you might see if it comes to a tracheostomy blockage is that the tidal volumes are going down because the narrowing of the tracheostomy tube won’t allow for the full volume to go in and out.
You should also see an increased work of breathing, potentially color change. Children change their color much quicker than an adult. So, on the one hand, they’re deteriorating quicker. On the other hand, they can also recover much quicker, but again, it all comes down to managing that and picking up on the signs early. That’s what we are here to do. Worse comes to worst, if the tracheostomy’s blocked then change the tracheostomy. Again, we are trained to do that. All of our staff are trained to do that.
I talked about accidental decannulation, especially with kids they’re pretty quick in pulling them out, much quicker than you think. You need to be pretty quick in putting it back in again. If for whatever reason you can’t put it back in, you need to start bagging with a mask, use a Guedel airway, potentially put a dressing on the tracheostomy hole so that air’s going in through the nose but that would be again, extreme emergencies. Again, it’s important to check oxygen saturation and heart rate especially overnight, during the day when the kids are active you only need to do that every once in a while. But obviously you need to keep a close eye on any signs or symptoms of deterioration all the time, but it is important that especially during daytime, that they can live a, “normal life,” socialize with their siblings, maybe go to kindie, go to kindergarten again. We’ve done that with many of our kids having our nurses, going to kindergarten with them so they can socialize with other kids. That helps them in their own development and you don’t want to have those kids medicalized, you want to have them normalized as much as possible. That’s the whole purpose of our service. Get them out of ICU, get them around other kids. That is, from my perspective, the best thing that can happen to those kids.
Obviously, I did talk about the nasogastric tube, I don’t want to sort of go into too much more detail there. Again, we are able to reinsert nasogastric tubes. How a child gets fed is really up to the regime when they come home from hospital. Some of them get fed every few hours. Some of them get fed overnight. Some of them get fed during the day. So it really depends. This is something you, as a family, or we can liaise with a medical team or with a dietician on how this should happen.
What else? Oh, the other piece of equipment I forgot to mention of is the feeding pump. Okay. Feeding pump, very important piece of the equipment. Also, the giving sets for the feeds very important piece of the equipment. You also need tracheostomy tapes, Velcro ties, scissors, saline. I talked about the resuscitation bag. I talked about the mucous strap, where you can send a sputum sample or where we send a sputum sample. Talked about the portable suction unit, suction catheters. I initially talked about funding. If you’re stuck with funding, you should definitely contact us because we can help you with that. So don’t worry about the funding, the funding usually takes care of itself. Most important thing is that you start talking to any funding bodies. Again, if you’re in Australia with the NDIS we can help you obtaining the funding through the NDIS assuming that your child or your loved one will qualify for the NDIS. But if your loved one is on a ventilator with the tracheostomy they will definitely qualify for the NDIS (National Disability Insurance Scheme).
Now, I also quickly want to talk about our staff and staff selection. If your child is on a ventilator with a tracheostomy, or even if they’re only with the tracheostomy, no ventilator, again, if you read at the evidence based home mechanical ventilation guidelines, you will read that evidence demands 24 hours intensive home care nursing with nursing staff with a minimum of two years ICU or pediatric ICU experience. Everything else less than that is simply life threatening. And as I mentioned before, unfortunately, kids and adults have died because they didn’t have the 24-hour nursing care. That’s why we point towards the mechanical home ventilation guidelines that are evidence-based.
So picture this, even for us as intensive care nurses it’s a higher risk. I argue we are looking after the sickest clients in the community anywhere around the world, and we can do that because we’ve got the skills and the knowledge. But it’s still the fairly high risk that even we need to manage very tightly, very safely.
But I just want to quickly talk about our staff. At the end of the day, we are promising to replicate intensive care in the home, instead of intensive care in the hospital. And we’ve been successfully doing that for the last nine years now. The reason we do it successfully, simply that we have a highly skilled workforce, that we have a workforce that’s very tuned in with our families. And we know now after all these years that in the ideal world that families want to have stability on their own end, we’re certainly achieving that. But they also want to have the same people coming over and over again, and we can’t always guarantee that. Similar again, to an ICU, in an ICU you won’t see the same staff member every day. And it’s similar in a home care environment. You will get a staff member from us that is safe to keep your loved one safe.
Whilst we understand that stability and familiarity is critically important for the successes of any Intensive Care at Home client. Nursing is very fluid these days and our nurses have so many opportunities in hospitals and with us, they often pick and choose where they want to go, when they want to work, how they want to work. And they obviously have lives as well, they have families, they have kids to look after. But what we do is we choose from a now large pool of staff and we will send you someone that is able to keep your kid safe, that is able to perform the skills that are needed to keep someone safe and stable on a ventilator.
Do we prefer having the same people coming to the same client over and over again? Of course we do. But the reality is that having no staff will keep you in intensive care and you will need to work through having new staff and how we can get them back to you over and over again if you like them. But even if you don’t like them, they do have the skills keeping your child safe 100%, and that frees you up from needing your child in ICU, right. Same in the hospital, I’m sure you would’ve seen and met nurses that you don’t like, and you would’ve seen and met nurses that you think, I would’ve preferred this nurse from the day before. But we are living in an imperfect world and what I will guarantee you is that we will send you staff that are competent and confident looking after your child. Even though you may not necessarily gel with them on a personal level straight away, but maybe it comes over time.
So there are some hurdles that will need to be overcome when it comes to building a team. You will need to get out to know our people and vice versa. There’s a bit of a process. That’ll take some time, but that’s why I wanted to bring it up because some families are not prepared, mentally prepared, that it takes some time to get to know people until we found the right team for you. But that’ll come by doing some trial and error, similar to a hospital you can’t really choose the people that look after your child because there’s such a big nursing shortage. We are lucky enough to be, from what I understand, the only organization at the moment in Australia that has the ability to hire intensive care nurses from a hospital and get their skills in the community. That is partly our skill to attract the nurses coming from ICU or pediatric ICU and working for us. No other organization in Australia, as far as I’m aware, has been able to achieve that so far.
So, we are very lucky in that aspect that we manage to attract the right people that have the skills, have the expertise, know how, but also the willingness in working in a home care environment. But we can break that down further when you come to us, who can work with you and your child, who are the staff that we’re going to send and so forth. Best to have that discussion one on one offline.
So look, I want to leave it there for today. I will link towards the mechanical home ventilation guidelines below this video once it’s uploaded onto YouTube or if you’re watching this on our website, you will see the link to the mechanical home ventilation guidelines below. I want to leave it there.
Now, if you have any questions, please type them into the chat pad or you can call in live on the show. If you are in Australia, you can call me now on 041-094-2230. That is again if you’re in Australia, you can call me right now on the show, live on the show, 041-094-2230. If you’re in the US or Canada you can call me on 415-915-0090. That is again 415-915-0090. And if you’re in the UK, you can call me on 0-118-324-3018. That is again, 0-118-324-3018.
Now, moving forward. So go and check out intensivecareathome.com for more information about our service, but the low hanging fruit, if you will, is just by calling us and then we can get the ball rolling as quickly as possible.
If you are still struggling for funding or you don’t know how to go about funding, please again, contact us. We can help you and point you in the right direction. Also, if you don’t know how to deal with intensive care teams on taking a loved one’s home or your child home again, please contact us. We’ve been involved in many transitions and we know what to do when dealing with multidisciplinary teams in intensive care or on respiratory wards. Please talk to us, we can help you with all of that.
You can also check out intensivecarehotline.com where we provide consulting and advocacy for families in intensive care, go and check out that as well.
You can also read our case studies on both websites, Intensive Care at Home and Intensive Care Hotline
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We also have a membership site for families in intensive care at intensivecaresupport.org, go and check out that. And I would love to see you again next week, same time on the live stream, and I will publish some quick tip videos during the week.
I hope you have a wonderful Saturday, Sunday, good weekend, and I will talk to you again next week.
Wishing you all the best. Thanks for watching. Take care for now.
Now, if you have a loved one in intensive care and you want to go home with our service intensive care at home and if you want to find out how to get funding for our service and how it all works, please contact us on one of the numbers on the top of our website, or send me an email to [email protected] That’s Patrik, just with a K at the end.
Please also have a look at our case studies because there we highlight more about what we can do for clients, how clients can live at home with ventilation and tracheostomies and you can look at our case studies as well at our service section.
And if you are at home already and you need support for your critically ill loved one at home, and you have insufficient support or insufficient funding, please contact us as well. We can help you with all of that.
And if you are an intensive care nurse or a pediatric intensive care nurse with a minimum of two years, ICU or pediatric ICU experience, and you ideally have a critical care certificate, please contact us as well. Check out our career section on our website. We are currently hiring ICU and pediatric ICU nurses for clients in the Melbourne metropolitan area, Northern suburbs, Sunbury, Bendigo, Mornington Peninsula, Bittern, Patterson Lakes, Frankston area, South Gippsland, Drouin, Warragul, Trida, Trafalgar and Moe as well as Wollongong in New South Wales.
So we are also an NDIS, TAC (Victoria) and DVA (Department of Veteran affairs) approved community service provider in Australia. Also have a look at our range of full service provisions.
Thank you for watching this video and thank you for tuning into this week’s blog.
This is Patrik from Intensive Care at Home, and I’ll see you again next week in another update.