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Anyone's LO have a trach?
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My baby has been in the hospital for over 3 months now and she has been intubated on a vent for all that time (minus 2 days). She has not been able to be extubated due to one complication after another. The doctors have started talking about her getting a tracheotomy. We initially were against it, but she is just not getting to the point of extubation without something coming in her way (usually an infection). So now we are seriously considering it. In fact we have already said we will try for extubation if she fails then a trach. I am not sure if we will even make it to trying for extubation at this point.
How has your child done with it? Can they talk? How hard is it to care for? How difficult was it for you to decide? Anyone have a child who had one and now does not? I am just looking for some inspirational stories or hope.
TIA.
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Re: Anyone's LO have a trach?
Hi,
my son is 12 weeks and he's been in the nicu since birth. when he was first born he was intubated and since has had a trach put in. his reasoning for his trach is b/c his throat was swollen b/c of the trauma of the intubation and he wouldn't have been able to breathe on his own without the trach. So for us the decision wasn't really ours. we were told before his procedure that he may have to be trached, but it wasn't certain. when we were told that he needed to be trached my feelings at first were mixed. i was happy that he didn't have that awful tube in his mouth anymore, but now he had a trach. now the fact that he has a trach is fine. we have learned all of the care for it and it's really not that bad. there have definately been some times where he's needed to be suctioned and it freaked me out, but with him that's just part of the process. he's still in the hosipital so i have no idea what it's going to be like when we go home, but i think we'll be fine. it's a scary thing, but a manageable thing.
My son got his trach two weeks ago tomorrow and is doing great. We were in the same position, he just was not going to be able to be extubated with out it. The nurses kept telling us how much more comfortable he would be and deep down I knew it, but letting him go into his fifth major surgery was a little hard to swallow. Literally the next day he was like a different baby. His sedation was cut in half and he was totally fine, and at this point he barely needs the vent he just couldn't get past the point of extubation. We will probably go home with a vent and home health for a few months while we wean him from it. Matt had been intubated for 8 weeks when he got his and he only has a little bit of swelling left from the tube. Our ENT group opted for an un-cuffed trach to allow his airway to heal so he has a terrible air leak around it, but he can cry and swallow a bit.
HTH. Let us know what you decide.
~Michelle
Hi there. My son will be 2 in 2 weeks and he has been trached since he was almost 2 months old. We didn't have a choice. At first I was scared out of my mind but later I figured out that was due to the hospital trying to scare us into taking him to a recovery center instead of home.
We have totally gotten used to it! Of course I can't wait until he doesn't need it anymore but as long as he needs it we are fine.
How has your child done with it? Drake has been really good about not pulling on it too much so far (knock on wood) but he does play with it more and more as he gets older.
Can they talk? His upper airway was completely collapsed so no, he has not been able to speak but we have taught him lots of sign language and he can definitely communicate! If there is nothing wrong with your LO's upper airway and she can blow air out her mouth, they might consider giving you a Passy-Muir Valve (PMV). It is a one-way valve that allows her to inhale through the trach but she would have to exhale through her mouth or nose. It's something you might want to ask about.
How hard is it to care for? It all depends on what your daughter's needs are. Drake needs to be suctioned almost constantly because he is just now learning how to swallow. That is our biggest hurdle. Other than that, you have to change the trach once a week (it gets A LOT easier after the first 2 or 3 times) and you have to change the ties when they get soiled. You will have a suction machine that you have to take care of which isn't difficult at all and you will have lots of supplies including emergency supplies that you will most likely never need. (knock, knock, knock)
How difficult was it for you to decide? It wasn't even posed as a question. The ENT simply said that he needed a trach and we agreed. Like pp said, it was kind of a relief that he wasn't going to be intubated anymore.
Anyone have a child who had one and now does not? We're getting closer (knock, knock, knock) but I do know someone whose son is getting his stoma closed next month!!!!
There are lots of things that we avoid because he has a trach (dusty parks, pools, people smoking, etc) but we are finding things to do and have gotten a lot braver recently.
All of that being said, my son is just a 2-year-old boy that loves laughing and having fun and he captures the hearts of everyone he comes in contact with (including an HVAC repair guy that we were sitting next to at a red light at 5:30am a couple of months ago)!
Now that I have written a novel I will just say please let me know if you have any other questions! There is also another website you can go to called tracheostomy.com. They have boards there and all of the kids are either trached or used to be. I haven't exactly broken into the group but they can be a huge resource!
GL! I hope everything goes well!
Another trach mommy here....the pp's gave great info! Good luck to you and your LO.
Nanakwaz...I absolutely love Drake's new siggy and those curls are too die for!!! So Cute!
Hi,
I hope I'm not coming in too late. May I ask what the underlying problem that your daughter has is? I ask because there may be some other options depending upon the problem.
My daughter was very close to having a trach placed this winter but we have so far avoided it. She was born 10 weeks premature and was intubated for her first 24 hours. This presumably caused scar tissue to form directly under her vocal cords, making treatment for it difficult. Her airway was 50% restricted (ended up being about 4 mm wide) so we needed to address the problem. We're in Boston and there are two doctors here and there's another in Cinncinatti that deal with specialized airway treatments. We ended up doing an experimental, but endoscopic, procedure that worked the second time the procedure was performed. (We were told that they'd try it three times before ruling it out as a possiblity.) If that didn't work we were going to go with either a trach or an airway reconstruction, which is a highly specialized and invasive procedure, but would ultimately correct the problem permanently and avoid the care needed for a trach.
If you go with the trach, take comfort in the fact that it's a straight forward procedure with a quick recovery and your little one will likely not be bothered by it one bit.
Good luck!