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JoJoGee
member
Tracheostomy?
JoJoGee
member
Hello all, I have been lurking over here for the past week or so. And, I was wondering if anyone on this board has had any experience with a Trach?
To give you a short background on myself. I delivered my DD, Lilith (Lily), at 26w 2d gestation due to HELLP syndrome. We have been very lucky in that she has avoided most preemie complications such as brainbleeds and PDA's. However, Lilith has had a difficult time getting off of her ventilator. At 34 weeks she was transferred to another hospital so that ENTs could scope her airway. The neonatologists assured us that Lilith's lungs were very good and that her problems breathing were likely due to complications with her airway. When the ENTs scoped her, they found some granulation which they removed. They found no other complications with her airway and had every right to believe that her next extubation would be successful.
However, Lilith is now 37 weeks, has been on the ventilator for 11 weeks and has failed 8 professional extubation and 3 personal extubations (2 professional extubations and 1 personal extubation post scope). And, 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 (4 lbs 7 oz), and they would like to extubate her closer to 2.2 or 2.5 kilos (4 lbs 14 oz - 5 lbs 8 oz). But, the ENTs think that Lilith needs to get a tracheostomy, simply because she has failed so many 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? TIA!
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Re: Tracheostomy?
Congratulations on your beautiful little girl!
My son Drake was born with several anomalies and a few of them caused breathing issues. We were told that a trach was pretty much his only option and we agreed. He had the surgery when he was almost 2 months old and is now 3 1/2 years old and is doing great! Things haven't been easy for us but not just because of the trach. We are getting closer to decannulation, though and can't wait!
Our situation is very different from yours so I won't go on for too long. Do you have specific questions on anything that I can help with? I will tell you that there are obstacles but nothing that you wouldn't be able to deal with.
Please contact me with any questions!
When they told us Matty needed a trach after many failed attempts at extubation we were so freaked but honestly saw no other option. Literally with in days of getting his trach he was advancing by leaps and bounds. We faced a thousand other complications down the line that had nothing to do with his breathing, but the trach was a sound decision.
You might be surpised by how well she does after getting it. Good luck hun.
I have lots of experience with a trach. My situation is different, but I can shed some light. My twins were born at 28 weeks, 1 day because of IUGR, pre-E and HELLP. My girls have chronic lung disease, and the little one Eden has severe IUGR and severe pulmonary hypertension. She was trached in November. She had a successful extubation on to nasal cannula but then a major set back with her PH and the only option for her was a trach. She also has tracheomalacia/brocheomalacia.
I am confused about Lilith's situation. Eight extubations is a lot and it doesn't seem like its the right option. Does she have chronic lung disease? You said the problem is with her airway... does she have tracheomalacia? If so, then its inevitable that she will need a trach. Growth to 5 lbs likely will not help the tracheomalacia, she will need about 2 years and/or surgery. Once Eden received her trach she did much better (temporarily, but that's because of her PH). I would say move forward with the trach. Her happiness and certainly development may be compromised because of being intubated. If you would like to talk anytime or need more insight or information feel free to read my blog in siggy or email me- hedinamanda@hotmail.com .
I hope that you are not upset or offended by this information, I hope I am helping a little. Lots of prayers for your little girl.
Thank you all for your insights.
Amanda - Lilith does not have chronic lung diseas. Her vent settings are very low and the doctors are confident that she would be off the vent in a very short amount of time after she gets the trach. However, my H and I were concerned that being on the vent any longer would begin to harm her lungs (in the end, having been on the vent for 11 weeks already, another 2 weeks will not make or break her). In addition, she has not been diagnosed with tracheomalacia. The biggest problem she is facing with her airway is edema of her vocal cords. However, the neonatologists have not ruled out the possibility that she has some other airway problems that could not be diagnosed through the scope. They assert that she is still very tiny, and that with some growth, some of those underlying, undiagnosed problems may resolve and therefore the edema of her vocal cords may be the only issue she will have to overcome (which increases her chance of a succesful extubation). I wish I could tell you more but even the doctors are not entirely sure what is going on. They have told us that Lilith is unique in that regard. Considering we are at the third best Children's hospital in the nation, I'll take their word on it. Oh, and I'm not offended.
I guess my biggest question is: Considering all the medical necessities a trach comes with - at home monitors, suctioning equipment, having to be knowlegable about trach care, and sometimes a home care nurse - is it ever possible to feel like a normal family? I worry that I'll never fully feel comfortable and relaxed if Lily has to come home on a Trach.