Matthew got a trach today. Any advice or info.......

Reina - posted on 09/07/2010 ( 7 moms have responded )

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My son got a trach today at 3:00pm. He will be getting medicine to keep him paralyzed for 2 weeks and morphine-saying they don't want him moving until the trach heals. If anyone can tell me what to expect or what its like when they drink milk from a bottle or if they can make any baby noises (like babbling)

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PaMella - posted on 08/03/2012

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He willl be fine.... My son got his trcah at two months old it was very hard for me because he was not paralyezed afterwards he did get morphine for the pain and the trach healed very nicly. He was able to PO feed or feed by mouth two month after with no problem. and he is always talking.

Reina - posted on 01/09/2011

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Thank you everyone so much! Matt is doing so good at home! & we have nursing care Mo-F 8am-4pm an 7 nights/week 10pm-6am nursing..... although they call in sick a lot.

Michelle - posted on 11/27/2010

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Hi Reina! Good to hear your son is coming home! Yes, I'm sure he will be on a monitor...it's probably an apnea monitor, and maybe a pulse ox monitor since he's on O2. My son is not on oxygen, so he just has the apnea monitor, and it does beep VERY loud (like a smoke alarm) if he stops breathing or if his heart rate is too fast or slow. You will get a little sleep, but it is interrupted sleep, so I would definitely do whatever you can to get some nursing help at night. My husband and I used to alternate nights, but he is such a heavy sleeper that he would sleep through things, so now I do it every night. We had midnight nursing before I went back to work, but we had to give that up in order for me to work (so we could have a nurse during the day while I am working). Some of the things that have to be done at night are keeping his humidifier water full, making sure he doesn't get tangled up in the things he's hooked to, and for my son, care related to his feeding tube. We have a video monitor, which has been very helpful. At least you can do a quick visual check without getting up (is he sleeping or awake, etc.). Eventually, your son will probably be able to cry a little. My son is 2 now and he can cry (still quieter than a baby without a trach) and he can say about 60 words! It is very nervewracking at first, but as they get older it gets easier!

Lindsay - posted on 11/27/2010

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My son just turned 7 has a trach and vent. When we came home from the hospital and still to this day we have home nursing. They are with my son when I sleep and work. There should be a case manager through the hospital that will set all of this up for you. You will aslo need a supply company.

Reina - posted on 11/24/2010

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Hi Brittany Hartman, Matt has had his trach since the 7th of September and doing so great now! We FINALLY have a day to go home, December 6th- in 12 days!!!! After 236 days that would be within 3 different hospitals. My Question is for a mom with a baby on trach collar with just the oxygen mist, I was told we'd get a monitor to go home.... So do those monitors "BEEP" at night if the baby moves or.... Can my husband and I sleep at night and would we wake up if our baby wakes up and needs diaper changed or wants to eat? Because we cannot hear him when he cries due to the trach. So-since your son has been home, are you able to sleep at night and get up ???? Or will I have to stay up 24 hours to watch him-even while he is sleeping??? i just want to know what it is like as far as- can i leave him for like a minute to go to the restroom or is that forbidden for his health???? I dont know how this will be...... Like-the nurses at the NICU always arent near him BUT he is on many monitors..... and sometimes I walk in there and it looks like he's been crying for such a long time BUT they dont know because he doesnt desaturate anymore....

Michelle - posted on 09/15/2010

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Hi! Hang in there...I know this it's heartbreaking to see this happening to your child. My son has had a trach since he was 6 weeks old, and he's just about to turn 2 this month. I know it's hard to believe right now, but pretty soon everything to do with trach care will be second nature to you! My son has always been able to eat by mouth some, but ended up getting a feeding tube (PEG tube) because at first he wasn't able to eat enough. He has cystic hygroma, which caused him to have cysts in his cheeks and under his tongue (as well as other places, mainly his neck), which meant that it was really hard for him to suck from a bottle (or breast). He couldn't really coordinate the whole sucking-swallowing-breathing thing. They were able to get rid of some of the cysts, and with lots of occupational therapy, his mouth now works correctly, he eats great, and we are only using his feeding tube for some water now (we are still working on drinking enough).
As far as noises, at first you probably won't hear much. At first when my son cried, you could just hear a change in his breathing, but no crying, but now he wakes me up in the morning saying "Mama!" without even using his speaking valve. They just have to learn how to push air past that trach so it hits the vocal cords. The more air, the louder they will get. My son goes to speech therapy (for a year or so now) and we are trying to get him to use his Passy-Muir valve (speaking valve), and as of about a month ago he is finally willing to try it sometimes. He can probably say about 10-12 words without it though, and we taught him some sign language too, so he is able to communicate pretty well.
If you have any questions please feel free to contact me! I have been going through this for what seems like quite a long time now!

User - posted on 09/14/2010

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I know you posted a week ago, but I'll try to help ya... Kids have trachs for a million different reasons, so it's hard to give you specific info. Many kids can make babbling noises awhile after they get their trachs, and some even get valves to help them with speech when they're older (passey-muir valves). Again, depending on why they have their trach, some are allowed to eat by mouth. If your son was able to before, that increases the odds he will be able to. It's a slow process, so hang in there. Trachs are WAY better than being intubated, even if he's on a vent. I HIGHLY recommend the website www.tracheostomy.com and the forums there. You'll get a LOT more answers there! http://www.tracheostomy.com/forum/index....
Let me know if there's anything I can do to help. My sons had a trach since he was six weeks old, and he just turned one.

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