Daughter had trach surgery yesterday...

[Jacob's Mom]

Hi Rose, Welcome to the trach board. You will find a wealth of information and great people here. A trach can be very overwhelming at first, but as many agree, it does get easier with time.

Re: your question concerning the mucous around the trach site and raspy, gurgling sound with breaths. It sounds like your baby needed to be suctioned. How was her oxygen saturation and/or heartrate at that time? Sometimes when a child needs to be suctioned, her o2 saturation will go down and heartrate will initially go up, but then can drop with the decreasing o2. This may or may not be the case with what was going on with your daughter, but that is what it sounds like.

As far as what the nurse said, take it with a grain of salt. No, it is not everyday that you see a baby with a trach, but there are plenty out there. Please ask any questions that you have. There is so much collective knowledge and experience here.

Best wishes!

[Triciasmom]

Hello Rose,

Welcome to our web family. You will find plenty of parents here with trached infants. I am sure, right now, you are feeling completely overwhelmed...but you are not alone!

I agree that your daughter just needs to be suctioned....using a vaccum system to pull the mucus out of her trach/airway. This is a very common thing for kids with trachs. I wonder why your nurses don't seem to know how to handle this, especially in a NICU. Even if trachs aren't "common", they should still have this knowledge. I don't know if this is something you can consider, but is there a children's hopital in your area that might be better staffed and equipt to deal with your baby's needs?

This is a great place to post your questions and concern...and sometimes even just vent your frustrations.

Godspeed

Clare

[sandra]

Welcome. You will find so much support and information here.

I agree. It sounds as if she needed to be suctioned. I would think a NICU would see a few trachs from time to time. I hope they put nurses on your case who are comfortable with trachs. It might be something to request.I have been amazed at how many babies are trached. I even had a mom stop me and show me her little boy who had been trached. He was about 4 and looked great. I so appreciated that.

A trach is scary, but you will be surprised how soon you will feel like an expert. Please keep us updated with your sweet girl's progress.

[Stefan & Jennifer]

Did I understand properly that this child was trached and left in a NICU where no one knows that trached kids need to be suctioned? I'm sorry, they need the doctor in there right away to explain to the nurses how to care for a trached child. Don't they have protocols (written) for this?

I'm hoping I misunderstood....Rose, your daughter will be fine. My son has a recessed mid-face due to craniofacial anomalies and he has had a trach since he was 5 weeks old. It was a shock and overwhelming at first, but now we're pretty much used to it. He's walking and signing and covering his trach with his finger to make sounds.

The recessed jaw can probably be fixed with distraction surgery by a craniofacial surgeon.

Good luck and hang in there. It's a heck of roller coaster at first, but then it just becomes bumper boats.

[Jacob's Mom]

Quote[/b] ]It's a heck of roller coaster at first, but then it just becomes bumper boats.

I like that! http://www.tracheostomy.com/iB_html/non-cgi/emoticons/biggrin.gif It is very true!

[anniecakes]

Hi and welcome I'm Rosie and my daughter Annie is on page 13, My question is this, Do you have a Childrens Hospital nearby or in driving distance? The reason for this question is Annie was in the NICU also and was not ready to come home but after being there for over 3 months they decided to send her to the Children's Hospital where they did the Trache surgery and where everyone there is trained to handle kids with traches, like a unit Annie was in was called Special Care, The NICU told me the same thing that they would have loved to get Annie back after the surgery but they are not equipped or trained to deal with babies with a trache, I feel if they are trained to deal with preemies on a vent then they should be trained for traches too. Good luck Rose and I hope everything turns out ok.

[LeslieML]

Rose,
Welcome. I agree she needed to be sx'ed but maybe she is leaking a bit around the stoma like my son does?? (He is one of the ones who wasn't told that "trache babies are seen and not heard". He pushes air out wherever he can!!!) I know that for a few days after surgery they kept Chase mildly sedated to allow the stay sutures to heal before he attacked them. I am shocked also that the nurse said they hadn't seen many trache babies!! Especially at Duke!!
Are you getting hands on yet? I mean trying to learn how to care for her? I know for some of us we can jump right in but for others it takes time, it is a personal choice. But I don't see why the nurse hadn't sx'ed her!! I would be changing primaries!!
Please keep us updated and congrats on the new addition!!!

[Stefan & Jennifer]

I'm glad that I misunderstood about them suctioning your daughter. Hang in there, Rose...I see you're coming here for good advice and we'll all help you through this. We've all been there, trust us.

[Momi2AntnJadyn]

Quote[/b] (LeslieML @ Jan. 17 2005,17:37)]I am shocked also that the nurse said they hadn't seen many trache babies!!
This is how it was in the NICU Jadyn was in too... this one nurse told me that once babies were trached that they no longer needed to be suctioned, that all we had to do was aspirate the secretions with a bulb syringe if need be http://www.tracheostomy.com/iB_html/non-cgi/emoticons/wow.gif They'd keep the same trach ties/dressings on her for weeks at a time and they'd STINK so bad, but I didn't know any better at the time. Thinking back, OMGGG I can't BELIEVE I left her there! But they were the experts to me. I CANNOT even leave her in the PICU now by herself where the nurses are very familiar with trach care... I just can't believe that she would have been without being suctioned for SO long, possibly days, when I KNOW how much she needs to be suctioned now.

[Doug-Iowa]

Welcome to the board. I think everyone has coverd what I was going to say, so I won't repeat, but I will add this: get yourself a handy dandy notebook, and start writing everything down. From Doctors and nurses names, to names of equipment, meds, and procedures. This has helped me so much especially when I was updating friends and family on how Mason was doing. It is a good place to write down questions too.

We jumped in right away suctioning, asking questions, and really learning how to take care of him. I know you are so overwhelmed, but it does get better, we will be here every step of the way for you.

http://www.tracheostomy.com/iB_html/non-cgi/emoticons/rose.gif

Jarita

[McKenna&clan]

Rose,
I have to chuckle a little bit about your sweetie pulling the vent off...sound like she's a fighter and more than able to do what she wants...more than once in a day. My suggestion to you is research some old posts here...Go up to search and put in...suction, car seats, travel, nursing, anything that comes to mind. There is lots of info and it's hard to absorb all at one time. Also if you go to the home page and look at the menu and click through each topic and read it thoroughly it will give you a good head start. Most of all remember there are PLENTY of infants and children with trachs and they all have very capable parents that take care of them and lead very full lives. You can do it...your baby knows you can. Just start with baby steps. You know we all do.
Post as often as you need to and ask all the questions you like...we are here!
Janet