Jump to content

Trach patient with EB?

Specializes in peds palliative care and hospice.

Hello fellow pedi nurses,

I have a question for you...

My assignment in the past week has included a child (18months) with Epidermilysis Bullosa (EB). The parents have expressed their concern that she may need a trach in the future and I was wondering if any of you have encountered this? I used to do trached patients in home health and my trick to keeping them healthy during the winter was chest PT. Obviously you cant do that (or can you?) with a child who will blister so easily, but on the other hand, you cant suction her frequently (or as frequently) as you would a "normal" (read: non-EB) trached kiddo. Would a vest help? or complicate things even more?

Obviously her airway is/will be a priority and you gotta do what you gotta do...but...Have any of you encountered this? How did you handle it? She has a fine motor delay due to her condition but is otherwise developmentally appropriate.

Thanks in advance for any insight!



NotReady4PrimeTime, RN

Specializes in NICU, PICU, PCVICU and peds oncology.

Okay, this is mostly opinion... Children with severe EB are not likely to survive childhood. Their airways are often as involved as any other part of their bodies and traching them does little to enhance the quality of their lives. We have had two little girls with the most severe form (juncional EB) on our unit in the last year and both have passed away. In the meantime their suffering was almost unbearable... for them or for the people caring for them. One of this little girls was trached. It prolonged her existence by a few months, that's all. It did make maintaining her airway simpler but securing it was a challenge. Trach chains are easier to keep clean than ties, but not a lot of places use them. As for chest physio, our docs don't believe it does much good and we are admonished against doing it for any but our CF and SMA kids. Perhaps a compromise for this patient of yours would be to use a padded vibrator on the lowest setting rather than pummelling.


Specializes in peds palliative care and hospice.

Thanks! I was thinking something along that line as well. Our docs are big on CPT, interesting that isnt the standard elsewhere. Will have to do some research on that one.


no experience with this, but I can't even imagine the skin breakdown from the trach and ties themselves, never mind CPT!

Wow. Just Wow. You think you have it bad...read about this one.

I believe that the EBP consensus on CPT now is that it is only mildly effective....And you have to do it correctly.....I have found it to be pretty helpful in some of the infants I care for..especially when I turn them side to side and do it in different positions...and for those with severe brain injuries, non-trached that dont reposition themselves well and dont clear their own secretions well and dont have access to better methods such as the coughalator or percussion vests. It is also more beneficial when done in conjunction with other resp. therapies such as the neb. treatments.

But some of the other equipment around now is much more effective then cpt.

Not all trached pt's have a ton of secretions or require frequent suction...I read a bit the disease you were talking about...and it didnt talk about copious secretions..I would assume that the trach would be indicated d/t inflammed or constricted airway.

As it is...she may be able to tolerate suction. We don't (as a rule) do the deep suctioning anymore..(though I am sure some do this still :(...). With trachs, best practice is to suction no further then 1/2 cm past the end of the trach tube...so you should not be coming in contact with skin.

R/t's have told us that proper humidification goes a long way when keeping secretions thin so they can easily be coughed up..same with neb treatments...and their are some oral meds that can be given to decrease secretions.

But how you would get the stoma to heal up or prevent trach infections...i dont know.

NotReady4PrimeTime, RN

Specializes in NICU, PICU, PCVICU and peds oncology.

It's very difficult to provide adequate humidity for a trached but not ventilated child with EB. The trach cradle that delivers the humidified air or oxygen can't be secured around their necks with the elastic that comes on the cradle. So it's continual process of repositioning the corrugated hose so that it's actually delivering to the patient and not to the bed or the room. That means the patient requires either close obs or nurse-in-room, which isn't always possible outside the ICU. And those oral meds you mention Sehille4774... they don't actually decrease secretions, they turn them into this gelatinous, rubbery substance that often plugs the kid's airway which makes things worse. So we try not to use them at all.

For this child, well-padded vibes will be the best way to go if she has difficulty coughing effectively.

Where I am from in PA, we have a humidification setup that the corrugated tubing (with or without a heater wire) is connected directly to a t-piece (same kind as the vent circuits have) with a short piece of exhalation tubing on the other side of the t-piece. The t-piece is then connected directly to the trach...or it can have an omniflex attached to the end of the t-piece and then connected directly to the trach.

An air compressor blows the heated humidity through the tubing to the patient (probably much like the set-up you are talking about)

Problem solved.

I too have observed mixed results from oral meds such as robinul...

NotReady4PrimeTime, RN

Specializes in NICU, PICU, PCVICU and peds oncology.

That sort of arrangement is against policy at my hospital. There is to be nothing directly attached to the trach that isn't pressure-regulated and with audible alarms... ie a ventilator circuit. If they don't need mechanical ventilation then we chase the child. We had a kiddie develop bilateral pneumos and eventually pass away because someone forgot to ensure the exhalation port was open. Very tragic.

Thanks for the info...I will definitely have to keep that story in mind!..its not hard for people who don't know to cover it with a blanket or something too..

We recently found one setup that the resp. tech had set up and told us and the family was ready to go...we were instructed not to touch the settings. Here the pressure had been set at 70 (cm/h2o?) which is an adult level...it should have been at 20.

T/G Baby was fine..no issues what so ever..but definitely increased secretions

We found out because their was a ton of water in the tubes, even with a heater wire...and we couldnt figure out why. The day nurse kept calling the equipment company who finally figured out that the pressure was the problem.



By using the site you agree to our Privacy, Cookies, and Terms of Service Policies.