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Cincinnati Babies
JoJoGee
member
We might be headed to a Trach
JoJoGee
member
Well, as many of you know, Lilith failed her trial off the vent last Wednesday. When they scoped her on Wednesday, they saw a lot of swelling in her airway. So, they gave her a couple doeses of steroids and took her off the ventilator again on Friday. Again she failed.
Lilith is now 37 weeks gestation, been on the ventilator for 11 weeks and has failed 8 intentional 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?
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Re: We might be headed to a Trach
I am so sorry. I don't have any information about the trach, but I have seen kids get them and then have them removed once they were big and strong enough to breath on their own.
Keep your chin up mama. You are doing a great job. I know it's so hard making decisions like you are having to make. Just remember that doctors can be wrong so go with what you think is best. If there is still doubt after her next extubation attempt, give her another chance. You will quickly learn that it is all on Lily's time. She will let you know when she is ready.
Stay strong. We are all praying for your sweet little girl and for your strength.
Beth
Max's Blog
Welcome to the world Finley Michael - born 2/13/2010
Baby Sister is coming soon!
I have a ton of work experience with trachs! I am a respiratory therapist at childrens but I work in the pediatric ICU. If you have any questions or anything, feel free to ask me! I will say we have many kids come in and have to get trachs and then are able to have them removed a little bit down the road. We have also had a few little ones get trachs because they do fail so many extubations and once they do grow a bit, they are able to breath fine without the trach. Feel free to ask me anything!
Kelli
Jennie
I dont have any personal experience but while my son was in the NICU I met a few babies that did need one.
I'm so sorry you are going through this but I am glad you had a conference and have a game plan. Good luck and I think about your little girl often. We spent almost 4 months in the NICU and it is a hard ride.
Are you guys staying in Cincinnati?
What a hard decision to make-- I can remember feeling like, I am barely a parent and already having to make these HUGE medical decisions for my child and being overwhelmed. ((hugs)) You are doing a great job and staying SO strong for Lily! It sounds like you have a plan of action that both you and DH are comfortable with and I agree with Beth that while dr's are wonderful if something doesnt sit right with you then dont feel pressured. Ask lots of questions, take a few hours or days to think it over and dont feel like you HAVE to go with the first option offered. There are almost always options. Lilith seems to be quite the fighter, dont give up hope yet-- she might TOTALLY surprise you! GL and lots of T&P headed your way!
Oh and for more trach experience/advice I would try XP this on the special needs board and the preemie board if you havent already.
Me too. I have worked with the placements of trachs in the OR, and I know that aspect. I also know that you probably don't want to keep the endotracheal tube in too much longer, because that can cause erosion of the vocal cords, and speech problems later in life. A trach is not the end of the world, and they can wean that as easily as they can wean from the ETT. Then they close the trach site. It is not permanent. I wish you well as you start to consider your options, and I hope you can find peace in your decisions. I have faith that she is in great hands, and will overcome her obstacles. Hang in there. My thoughts and prayers are with her.
I am continuing to pray for you guys! I think some ladies have had some great advice here but I am not the wordsmith of the group.