Building a Pediatric Tracheostomy Program

[Gopi Shah]
When you come into your fellowship, all of a sudden, you are jumping in to the Children's Hospital world, the peds world, and I didn't realize the nuances between, major differences actually, between pediatric and adult tracheostomy not just obviously the surgeries, but in terms of care and management.

[Romaine Johnson]
You raised an interesting point when you talked about the differences between the adult world and the pediatric world. And I'd had a thought that one of the big differences is that, in the adult world, when you place a tracheostomy in a patient, it is kind of the end of life right? They've had a stroke, or they have a major health event, and now they're in the hospital on a vent. And that’s after cardiac surgery or something like that, and they need a trach. But they're usually older, and they're sicker and a lot of times they wind up going to rehab, and you never really, you don't follow along those patients’ long term.

Where in pediatrics, it's often the beginning. So they're doing their trach when they’re six months old, nine months old, a year, almost 80% of the trachs we do at children's, they're under a year. And the average time it takes to decannulate a child is two and a half years. So I'd say the median time is at least two and a half years, but only about 30% of our patients ever get the trach out. About 15% pass away, so the majority of patients where you put a tracheostomy tube in, they keep the trach throughout their childhood. So if you put a trach in a child who's six months old, or a year old, oftentimes, you're going to be following them until they're an adult, if you practice that long…So I think that you raised that very interesting point in terms of the perspective of tracheostomy, it really is a long term care issue. So you're dealing with a long horizon of how do you manage this child with the tracheostomy as opposed to the adult that they're probably, you're going to see him once or twice if ever after you put the trach in.

[Gopi Shah]
…How do you interface with the team? How regularly, what does that look like?

[Romaine Johnson]
…So we have a standard once a month meeting, where we sit down and we talk about all the issues related to the program. And then we can have any ad hoc meeting as we need. And then I share clinics with … the speech therapist and the nurse who spans inpatient outpatient care. We have a multidisciplinary clinic. So I see them all the time. So you know, we have trach clinic just with kids … not on a vent. We have that twice a month. And then [our advanced practice nurse] also has her own clinic and I'm there at the same time, I have a feeding clinic and so when she's having a trach clinic, I'm in the feeding clinic, but I can be consulted for any patient.

And then we also have another multidisciplinary clinic. This clinic is at Cityville, which is a campus, up the street from the main hospitals, kind of across from the train station in Parkland. And that's our vent clinic. And so that clinic, they see a pulmonologist, these are all kids on a vent. They see a pulmonologist, they see me, the nurse, my nurse practitioner, my nurse assistant is there, I have my personal nurse there, our speech therapist is there, we also have our, there's a dietician, there's a respiratory therapist, it's a big group of people. And we see 10 to 14 patients twice a month in that clinic. And these are all vent dependent patients from all over the city.

So we have at least four or five trach clinics a month that are multidisciplinary. And so I meet often with them during those times. So there's a lot of communication and interaction and work. Yeah, they take care of a lot of the inpatient stuff … But yet, and still every time they write a note, they send it to me, and I co-sign it. If they need my help getting a patient scheduled for surgery, then I'll do it, that kind of thing. So there's still, even though we only meet once a month, there's a lot of interaction and meeting.

[Gopi Shah]
Yeah, that's awesome, I think multidisciplinary, I'm sure for those families that's such a huge convenience factor for them to be able to see multiple providers during one visit. And then on our side of it, I'm sure it's helpful to be able to be in a place where you can be more collaborative and see the people that are kind of working with the patient as well.