Vent settings when trached

[NattersMommy]

I have written before about my daughter Natalie. She was born at 33w3d but has had a difficult course in the NICU. She has some degree of pulmonary hypoplasia due to my membranes rupturing at 15 weeks, severe BPD and now PH due to the BPD.

Her adjusted age is 2 1/2 months. At 4 weeks she was nearly extubated to CPAP but the steroids masked an infection and she has not been able to come back from it. She has been back on the oscillator for at least two months (can't do the math...too depressing). She developed NEC at 44wks gestational age and that was a yet another big setback.

Recently she had two weeks of slow steady improvement. The power is down to 3.1 and her MAP is 15. She seems to be hitting a plateau but she may also have an infection.

Sorry.....I am being long winded.

My big question is this-what setting was your child on when s/he received the trach? We obviously can not get one while she is on the oscillator but they say that when she goes back to conventional it may be a long time before her settings are low enough for a trach.

She is a big girl now-over 9lbs. I don't know if size is a factor at all with vent settings. They say her MAP of 15 is not as high as it seems since she is older. Before going to the oscillator her PEEP was 8 (incredible....before the original infection it was only 4) and they say a trach can't support those kinds of pressures.

Sigh......We won't know what settings she needs until she makes the switch but I am trying to get an idea of what other hospitals say.

I am looking forward to her trach like it will be a million Christmases at once:D . I really believe in my heart that it will make SUCH a big difference for her. I have not held her since she went on the oscillator and I look forward to the eventual freedom we will have with the trach.

OK. I did not mean for this to be so long. We have hit another bump in the road with her current infection and I am trying to look forward to something. Thanks in advance for any wisdom you have. Natalie is such a big girl now and I hate to see her stuck with an ET tube.

TIA!!!

Jennifer
http://babygirltee-jennifer.blogspot.com/

[Christamae]

A cuffed trach can definitely support that. I have a Newport HT50 which can ventilate much bigger numbers. My peep has been 8 before and is normally a 7 at night...

Go for the trach.

[bryantem]

It has been nearly 2 years, but I believe her peep was at 6 and her rate was at 10 when she was trached. She trached due to structural abnormalities and not BPD, although she did have BPD.

[NattersMommy]

I was told they won't use cuffed trachs in babies. I wonder if it will be possible? Maybe just until she gets better? We have not had a consult with the ENT people yet because she has not been close enough for surgery yet.

[Big Al]

Cuffed trach or a cuffed ET tube I don't see the big differance. As for PEEP I have seen uncuffed trachs with PEEP of 10. Talk to ENT they will be able to give you the whole picture.

[lynn]

My son had a cuffed trach for a couple of weeks at age 7mos, we switched back to uncuffed when we didnt notice much difference in vent settings..... He has a PEEP of 7, PIP of 29--(since being stable) he is trached for rib cage anomalies, that allow his lungs to collapse, so there is great pressure needed to keep them open, I had never heard of trach not supporting pressures- our original PEEP at birth until age 4mos was set at 10.

[NattersMommy]

Wow. I am so glad I posted. The neonatologists keep telling us it may take a few months to get her to settings low enough for a trach. When she gets off the oscillator I am going to ask to meet with the ENTs to see what they have to say. I wonder if different hospitals have different guidelines or something.

I just know that she hates that ET tube and as long as she has it she will need a lot of sedation. I want her trached and comfortable.

Thank you for your replies. I am hoping we are closer to a trach than they say :o)

[kshell]

Natalie came home with a peep of 8. Our CRNP from pulmonology said they have had keeps with peeps of 14 at home with a trach. Not sure if that helps.

[MomofTwoBoys]

Hunter had a cuffed trach and was on VSIMV mode (volume not pressure), but his peep was 10, his pressure support 10, rate of 28, and volume of 50 when he was originally trached... he came home cuffed and on these settings so it's definitely possible... from what I hear nicus aren't as aggresive with trachs/vents as picus are (Hunter weighed just shy of 9 lbs when trached). Definitely talk with pulmonology, they would be the specialist to manage bpd and PH (with cardiology as backup).

[Madeline and Molly's Mom]

Yes, definitely have the pulmonologist and cardiologist on board... and Madeline was about 10lbs when she was trached and she had a custom Bivona with a cuff... now that she's off the vent she is uncuffed.

[kadiera]

Also, it might be worth asking for a second opinion.

We ran into "well, neonatologists are really pulmonologists, so asking someone else won't get you a different result" - which is baloney.

Ask them to find the doctor that will follow your child after discharge - the pulmonologist and the ENT - and have them both come in to consult, because they're the ones who will have to deal with the long term issues of what's done now.

[kshell]

Also, it might be worth asking for a second opinion.

We ran into "well, neonatologists are really pulmonologists, so asking someone else won't get you a different result" - which is baloney.

Ask them to find the doctor that will follow your child after discharge - the pulmonologist and the ENT - and have them both come in to consult, because they're the ones who will have to deal with the long term issues of what's done now.



Ditto, same thing happened to us at Natalie's birth NICU. Neonatologists are pulmonologists. That maybe good enough for a child with an uncomplicated course in a NICU but we didn't get anywhere till we went to CHOP and then low and behold, we did get different answers from a pulmonologist and a cardiologist. Good luck

[tbhartman]

What hospital is Natalie at? If it's not one of the big ones, I might consult a big on (Cincinnati, Philly, Boston, etc) It's always worth asking.

[Niff]

I agree with getting a second opinion. We had many issues with our Children's NICU about vent settings.

I remember there being a weight limit for the trach, but surely it was less than 9lbs. At the time it didn't matter for us as they literally had no other choice once they saw her airway, but I recall another family being told that there was a weight limit, among other things.

As for the cuffed v uncuffed trach, our hospital doesn't like to use cuffed trachs unless the child is being ventilated... and even then they use it as a last resort. The reason is that it weakens the trachea, which could lead to a list of complications, one being permanent trach dependence. But there are many children (babies, toddlers, and the like) with cuffed trachs who were eventually weaned from the vent and successfully decannulated.

When Mackenzie came home her PEEP was only 4. I remember it being 6+ at one time but can't remember the exact number.

:hug:s to you and your family

[NattersMommy]

She is at Strong in Rochester NY. We did ask for a consult with CHOP but we have not discussed the trach issue with them, just her general respiratory issues.

I know there are riskes to using a cuff....was hoping maybe we could do a cuffed trach until her settings are lower rather than waiting for lower settings to do the trach.

Right now it looks like she is having intestinal issues so this may all be on hold regardless. I can not believe all the hurdles she has had to jump. My sweet girl is one heck of a fighter.

[scm]

I have been following your blog since your first post, and what a fighter Natalie is :hug: Hooray for her recent progress! My first thought is get her to a bigger hospital! Natalie definitley isn't your "typical" preemie, and your situation reminds me a lot of my son's course in our local NICU. He wasn't able to be extubated and they kinda kept trying the same things over and over, until finally they recognized he needed to be seen at the children's hospital where he was finally trached. And yes, once they are trached it makes such a world of difference to their comfort and safety. Even if Natalie is getting excellent care where she is now - a smaller hospital isn't going to have as much experience which tricky cases like yours.

Best of luck, and I'll be keeping my fingers crossed for your sweet baby :hug:

[Big Al]

I know there are riskes to using a cuff....was hoping maybe we could do a cuffed trach until her settings are lower rather than waiting for lower settings to do the trach.
Cuffed trachs have some risks of complications, but the ET tube is cuffed as well and has the same risks. So I don't realy buy that whole argument. I can't understand why they won't trach, especially if mechanical ventilation will be a long term thing.

[kadiera]

I remember there being a weight limit for the trach, but surely it was less than 9lbs.

I've heard there's a weight limit, in order to get a big enough airway - when Alexander was intubated at 1 lb 7 oz, they used a 6 fr ET tube - looking back, I'm not entirely sure it wasn't a suction catheter :)

I know he weighed about 5 lbs when he got his trach, and they used a 3.0 neo, so conceivably he could have been trached when he was smaller than that.

[tbhartman]

They probably can't transport on an oscillating vent from what I've gathered.. but you can always talk to the nearest high level children's hospital and keep them on the up and up, and transfer her if it becomes a possibility. I've been keeping up on Natalie, what a cutie.
Take care'
Brittany

[Madeline and Molly's Mom]

I agree with all of the posters here... no offense to the hospital where she is at. I know that we benefitted from having Madeline transferred to Childrens in Boston as soon as she was fit to go and we were (and still are) being followed by the best docs... a neo that actually *is* a pulmo (he has *both* designations and isn't just a neo that thinks he's a pulmo) and a world-renowned cardiologist. PM me if you're interested in just getting a talk in with at least the neo/pulmo. I'm sure he wouldn't mind.

Also, getting a trach and extubated was the best thing for our daughter, even though she was still precarious. She could start weaning off of some of the sedatives/paralytics and developmentally it's miles ahead.

Just my two cents. :)

[NattersMommy]

Thank you for all the replies. Her ET tube is not cuffed, they will not use cuffed ET tubes at this hospital.

I would LOVE to transfer her to a bigger hospital, but I don't see how it would be possible. We are in Upstate NY and Strong is the biggest NICU here. I think the next closest would be at least 5-6 hours away. She can't be moved on the oscillator and then when she is off I don't know how we would coordinate moving her so far away or even justify it with our insurance.

It is really frustrating. The second opinion we received from CHOP suggested meds for the PH but not much else. She is already on iNO and sildenafil. I so wish I could wake up and find ourselves in Boston or Philly.

We are looking at doing a round of steroids in the near future. Hoping with all my heart this gets her to the conventional vent and we can get a consult with the ENTs.

Those who went to bigger hospitals-what changes did they make that helped?

Thank you for the compliments-we think she is pretty cute too :o)

[Madeline and Molly's Mom]

First, just remember that you're doing a great job! I know it's difficult and frustrating and all of that...

Perhaps what she needs is the most frustrating of all... time. Trust me, that was the hardest pill to swallow, knowing that our daughter was going to be in the hospital for 17 months... but she is now an amazing, chubby, smiling chicky with a happy demeanor and quite the attitude. It takes a special kid to make it through this and I have no doubt Ms. Natalie is one of them!

I know that people have spoken on the phone with our doc for a consultation... and justifying it to the insurance, well... that's something that you shouldn't even have to worry about.

If in the future she should need a cardiac catheterization (to get a better idea of her pressures for the pulmonary hypertension) someplace like Boston or Philly would probably be the best place to go.

I certainly know that our local hospital didn't do those... or at least didn't specialize in kiddos anyway.