Trach?

JoJoGee

So, Lilith is 37 weeks, has been on the ventilator for 11 weeks and has failed 8 professional extubation and 3 personal extubations.  Earlier this week the resident at the NICU came to me and told me that the Neonatologists and ENTs disagree on what's best for Lilith at this point.  The Neonatologists think Lilith needs to grow more.  She is still under 2 kilos, and they would like to extubate her closer to 2.2 or 2.5 kilos.  But, the ENTs think that Lilith needs to get a tracheostomy, simply because she has failed so many previous extubations. Then, the resident told me it was up to my H and I to decide what we wanted to do.  H and I asked for a conference with the Neonatologist and the ENT.  We had that conference on Thursday, and got a lot of good information.  Long story short, we decided to let Lilith grow more with the understanding that if the next extubation fails she will be getting a Trach.

While we are providing Lilith with one more opportunity to breath without her ventilator, I don't have much hope that she will actually succeed.  I think no matter what, we are headed to a Trach.  So, my question is does anyone here have experience with a Trach?  Any thoughts or information?

I will also be posting this on the Special Needs board.  TIA!

njdcgirl

Sorry you have to make this decision. I hope the next extubation works. I don't have any personal experience but I am going to PM you right now with a resource. Please keep us posted!

njdcgirl

So the PM function doesn't seem to work on my phone so I'll just put it in here. You should check out the preemie boards on inspire.com. I've found a lot of great resources on that board and there are several people on there whose loved ones have had trachs with great success. Their search function works too (unlike here!) so you could just do a search if you don't feel comfortable posting. Best of luck to you and your little girl!

Leigh71

I used to work in the hospital...but now, because of the schedule I needed, I care for 1 little girl who has a trach.  She is very comfortable w/it...  she is special needs, and has a G-tube for feeds.  I've cared for her for about 4 years.  Most of the time she has a "pacifier" on it... it's actually a cover, that allows her to breathe in/out.  (so not sure why the company calls it a pacifier), and it's purple. 

The only time we leave her "paci" off of the trach...is if she is super congested/coughing a lot.   I am sending T and P your way.  and (((hugs)))

lemen99

I'm so sorry you and your LO are going through this.  T&P!

JakesBride07

I dont have any advice or experience but I wanted to let you know I will keep you in mu thoughts and prayers and hope she will be able to avoid the teach.

Meg4583

Just lurking here, but I am a pediatric nurse and I think you came to the right decision. Each intubation means more potential damage to her airway.. the trach would avoid this and allow for you to work very slowly on decreasing the ventilator settings while avoiding any more potential airway damage. 

Also, you will learn trach care before going home, and I promise once you learn it its not that scary/terrible! 

And just to clarify re: the above poster and the pacifer attached to the trach, its a Passey-Muir valve, also known as a speaking valve.  Some kids have them and some don't. What it does it it caps the trach, and allows for air to be drawn in through the trach during a breath, but when the child exhales it closes the valve and allows for air to travel up over the vocal cords, thus allowing for speech/sounds to be made.  

I do hope she doesn't need a trach though- sometimes they do just need a little more time to grow, but with that many failed extubations I think you are right in thinking that a trach may be unavoidable..

jojobean1977

My daughter was in the NICU for over 9 months. She was a 24 weeker. The decision to get a trach was hard but once we did she got so much better and looked so much more comfortable and gained weight easier.

 She came home with a trach/ventilator and gtube. I am a RN so I was able to take care of her otherwise we would have had a nurse come to our house. She does not have the ventilator anymore and does eat by mouth. She is able to have the trach taken out but we are holding off since this was her first year of preschool and she has gotten sick alot and having the trach makes her able to stay out of the hospital when ill.

JakesBride07

Just curious have they mentioned steroid treatment? My lo is much younger but they highly recommended we try those in order to get her of the vent. I know they situation may be entirely different but it maybe worth asking about.

I can't offer more advice then that as we just started treatment steroids yesterday but our Neo feels confident that it should help tremendously.

royalcrown1

I am pediatric nurse and I just wanted to offer one more piece of information.  I always tell the parents that I care for that a trach is not permanent.  It will allow you to take care of your LO at home (once you learned all the equipment) and it will allow her to be more mobile and more comfortable.  And once she has grown, hopefully the trach can be removed.

It will be scary at first, but the nurses in the hospital will teach you everything and won't let you go home until you are comfortable with it.  At my hospital, we require parents to do a 24 hour stay where they complete all the care before they can go home with a trach.

Good luck!

JoJoGee

Thanks for you all your kind words.

Yes, Lilith has had several rounds of steroids, plus several doses of topical anti-inflamatories after the granulation was removed.

Her biggest problem is edema of her vocal cords.  However, the neonatologists have not ruled out the possibility that there is something else going on that cannot be diagnosed from the scope.  It is their hope that if Lilith grows more, any undiagnosed problems will resolve themselves, making the edema of her vocal cords the only problem she needs to battle (which will increase her chances of a successful extubation). 

I just worry that, with a trach, we'll never be able to gain a sense of normalcy when Lily comes home.  How do you feel comfortable and relaxed when you have to worry about suctioning, trach changes and a home care nurse?  Just a rehortical question.

Rcolvi01

My daugher was born @ 25 weeks in 2004 and when she was 6 months old she was trached, and honestly it was the best decision that we ever made, it was the only thing that allowed her to come of the vent. She remained trached for a little over two years until she had a surgery to correct her airway, at first we were told her airway was ok but they later realized that her vocal chords were paralized and she need an LTR to fix the problem after the surgery she was able to successfully breathe through her own airway. As for being comfortable at home, it comes with time, at first it is very new and frightening but after time it becomes second nature. I hope this helps, and I hope your daughter continues to do well. Hopefully a little time is all she needs but if it is not please know that trach's really are not that bad.