View Full Version : New Here...I have many questions
04-07-2009, 07:21 PM
Well I have a 3 month old baby girl and she was born with craniosynostosis. Up to now she has tested negative for any of the syndromes related to craniosynostosis. However, she does have some of the complications found in some of the syndromes. For instance, she nas narrow airways. Unfortunately she has stopped breathing twice. Also she is a very loud breather and snores when she sleeps. She currently has a g-tube because when she ate by mouth she would desaturate. And now the doctors reccomend that she get a trach. We have a meeting with the ENT tomorrow evening. I'm so scared! I try and talk to some of my family and friends to get support from them and at times I feel like I have to comfort them. :(
04-07-2009, 07:33 PM
Hi and welcome. I know the trach seems scary at first but if that is what may have to be done please know there is life after the trach. My daughter is 6 months old and has been trached for 4 months now. She is also ventilator dependent 24/7 and that is much more of a hassle than the trach but we are getting use to that as well. Please feel free to ask any questions you may have about the trach. There are some experienced mommies on here who have really helped me learn so much about trachs. Hope your appt. goes well and please keep us posted.
04-08-2009, 09:14 AM
Welcome. Please feel free to ask any questions you may have and consider no question too stupid to ask. Trachs are scary to consider but you may find your daughter does so much better with a secure airway. I am sorry you find yourself in the position that you have to comfort your family. That can be very frustrating and hurtful to you but it tends to be a fact of life for parents of children with disabilities. We will be here for you and we understand. :hug: :hug: Karen
04-08-2009, 10:05 AM
Hi and welcome. I know you would prefer not to join our little club, but everyone here is great, no one will ever judge you and there is always someone who has been there, done that, and can answer your questions. It is a scary time for your family, feel free to ask away, we will help in any way we can. Life with a trach is doable, we have been living with a trach for over 4 years now. The best part about having a trach placed is seeing your little one breathing easily for probably the first time in their life. Good luck with your ENT.
04-08-2009, 12:26 PM
Ditto to what everyone else has said so far. We didn't know our 5 year old even had any airway issues until circumstances forced us to place a trach 2 months ago. It was the best thing we could have ever done for her. I'm now looking YEARS back and seeing where she actually would have benifited. I too was scared to death about handling the trach, and in the last two months have really settled in to Kira's care. If that's what you and the doctors decide is best for your little one, then know that it's VERY doable and gets less and less scary as time goes on.
Hello and welcome! Trachs are scarry at first,but not nearly as scarry as having your child stop breathing. If that is what is needed to make your child comfortable when breathing you will get over the fear. Hope your meeting with ENT goes well. Ask any questions you may have, I was going along on my own for quite a while till I found this site, and the tips and info I have gotten from these other parents are incredible.
04-08-2009, 04:24 PM
I still haven't met with the ENT the appointment isn't until later today. I've been reading posts on this site all morning. I can't believe all the things some of you have gone through! I just hope I'm as strong as all of you are. Okay this is the thing besides her narrow airways the ENT and neurosurgeon are recommending my daughter get a trach because she will have a surgery to separate the sutures in her head and the doctors are afraid that the swelling after the surgery will compromise her airways and in case of an emergency they won't be able to help with her breathing because of the swelling. Deep down inside I do feel like a trach is the best option for my daughter, but that doesn't take away my fear. But like many of you say over time I will get use to it and most importantly my daughter will be able to breath better.
Welcome. I can't add too much-but am with the others-a trach is so scary at first, and yet after you get use to it it really isn't bad at all. My husband and I first said no to a trach--we were back in 2 months later and had one put it. It was the best decision we made for our son. I was worried about quality of life-silly me, I now can see that we actually improved his quality of life. Now he is extremely active and enjoying life-before the trach he was a crabby baby who couldn't breathe well.
Good luck and know that these people on this board are FABULOUS. You have come to the right spot for support. Sometimes we moms are the ones who have to be strong--be strong and yet know that it is ok to be upset, devistated, scared. That is all so normal. You'll find strength you never thought you had.
:hug: :hug: And when it just seems like it is all too much-come here and ask for support, because we've all been there, we all know how you are feeling-that in itself is the main reason why I'm here. I feel so much comfort just knowing that someone knows how I feel. They aren't pretending-they know because they live it as well. Take care and your daughter is in my thoughts and prayers.
04-09-2009, 01:00 PM
I know its scary at first, but you get used to it. Everyone here is sooooo great! This has been my single best resource for practical, everyday information regarding pediatric trachs. I'm so sorry your daughter has to have one :hug: pretty soon you'll almost forget its there though :)
04-09-2009, 02:02 PM
Hi everyone.....after talking to the ENT and the pediatric intensivist I feel much better about letting my daughter have a trach. The doctors felt that they wouldn't feel comfortable sending her home with out it and of course the PICU isn't the place for a baby to grow and develop :) And I want her home with me anyways! The only thing that made me feel sad besides her going through surgery is that I won't be able to hear her coo or cry :( Hopefully its not for a long time before I can hear her sweet voice again. Her surgery wouldn't be until next week so I will cherish these next few days ;)
04-09-2009, 07:32 PM
Glad you are at peace the the decision you have to make. Getting our daughter home helped us decide we wanted the trach also. I would suggest recording your daughter so you can have a tape of her cooing and crying. I only heard my daughter make noise the first week of her life and it has been the hardest part of the trach so far. Now that she is at the age of cooing and laughing it breaks my heart that I've never heard her voice--I can't wait until the day I get to hear her again so get it on tape while you can. Good luck with the surgery and please keep us informed.
04-10-2009, 03:41 AM
I'm so sorry you ever had to have to make such a decision as a mother, but like so many others have said, you are making the best decision for your child. In time you will learn how to take care of her airway needs, and it will become second nature. And yes! Video record those vocalizations and naked neck as much as possible!!! It might be awhile before you hear or see them again, but find peace of mind knowing as children get older and their anatomy bigger, many children can get their traches out successfully. There is life after a trache!
Hang in there mom!
04-10-2009, 03:31 PM
I'm not sure if I had already mentioned that my daughter is currently in the PICU because she had stopped breathing a few days ago during the night while my husband and I changed her diaper and prepared her milk formula. Well anyways we were expecting for my daughters surgery to happen until next week, but yesterday morning while the doctors did their rounds they noticed that she was struggling to breath and although her saturations were good they were concerned that she was working to hard. They kept monitoring her through out the morning and unfortunately they didn't see any improvements. The ENT, neurosurgeon, and Pediatric intensivist were afraid that she would get extremely tired and stop breathing completely. So, the doctors didn't see any reason to wait any longer for her to get her trach and well last night she had her trach put in. Thank God that everything went well and the doctors told us that they immediately saw an improvement with her breathing :) It was hard seeing her the first time with tubes coming out of her neck, but if its going to keep her with me longer and give her a better quality of life than I'm just happy. Thanks to everyone that commented on my posts and made this life changing procedure easier to deal with.
04-10-2009, 04:34 PM
Wow......I guess your daughter made the decision for you! I'm very sad for you in that you were left with no choice. However, it's what she needed and I think you will find that she does SO much better now that she's not struggling to breathe. I'm praying that she heals well. You CAN do this...it just takes time to get used to.
04-10-2009, 09:51 PM
It's good that her breathing got easier quickly. May this be the beginning of the way home. Karen
Good thoughts being sent your way for a quick recovery, and hoping you get home soon.
04-10-2009, 10:33 PM
Glad to hear she's breathing better all ready. Once again please feel free to ask any questions and hopefully you will have her home soon.
04-14-2009, 06:46 PM
While my daughter has had her trach out for about five months now.... do I /ever/ remember that decision to put it in! It was very scary for her, but so was everything about her. She was born three months early, and had problems getting off the vent in NICU. The more they tried, the harder it was. Her neonatal doctor talked a lot with us about how the trach would help her. And it did!
You will get used to the routine of caring for the trach. It's scary at first, but after doing it a few days, you'll learn to watch and listen to your daughter, will instinctively know what she needs for care. :) It has it's challenges, but in the end, it's for the best.
And don't worry so much about not hearing her coo or cry. For one, my daughter learned how to make noises around her trach! And then in time, you can look towards the PMV or capping it for short times, which will give her ways to make noise as well.
Just remember, one day at a time. Certainly keeping you and your daughter in my thoughts! Good luck!
04-16-2009, 06:50 PM
My baby was trached at 2 months old due to tracheomalacia. She went home from the NICU a few weeks later. We too were reluctant to allow the trach, but deep inside, I knew that the trach was what she needed. Aside from being in the PICU for 2 weeks due to illness, she has been doing wonderfully. Her pediatrician thinks she is amazing- She is taking all of her feeds by mouth and the trach hasn't stopped her in any way. She is starting to pass air through her vocal chords and you can hear a little squeek now and and then. We just started working with the Passy-Muir and she is doing well with it. Everything was so scarey at first, but now it is all routine.
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04-17-2009, 03:00 PM
Welcome to the boards. You will get a lot of support here. I see Kamilah got her trach. I hope that has really helped her breathing.
My daughter also has isolated craniosynostosis, sagittal. (as well as some other condidtions, but no syndrome) Here is a link to her blog: http://ainsleyrae.blogspot.com. At the bottom is a link to her first year montage on YouTube. You can see she had her first repair at 3 months of age and the second at 9 months and how her appearance changed. Hers was pretty severe and her appearance is complicated by a case of ptosis that worsened after the surgery. If your daughter doesn't have ptosis you are unlikely to experience that complication but you can see that they were quite successful in the reshaping.
PM me if you have any questions.
Best of luck bringing your daughter home and adjusting to life with a trach. :hug:
04-18-2009, 12:23 AM
Hey moms, thanks for the support. It's been a week since Kamilah got her trach in, and she has been breathing better. Did anyone have to get a custome made trach? Kamilah has a short and chubby neck and the ENT dr is concerned that in certain positions the trach opening can be blocked by her skin folds. I hope that having a custome made trach doesn't make things more complicated.....hopefully I can bring her home soon I miss her.....
04-18-2009, 03:51 PM
My son received his trach on 4/01/09. He has a chubby neck and has a bivona custom flex. We love it. My guy is 2 1/2 and we heard how it may be more difficult for him to breathe with the extended trach, etc. He is doing beautifully and we have had no issues at all with it. Due to his chubby neck he had the beginning of skin breakdown under his chin, once they replaced the standard with the custom his skin healed up beautifully. Good luck.
04-18-2009, 04:01 PM
Oops, I should add we were trached because the intensivist's feared that his hypotonia had finally hit his lungs and he was not strong enough to breathe on his own -- we were also told that he would be on a vent 24/7. He is not, and is doing great with his strength of breath, the extended tube did affect his sat rate slightly - he baselines at 97 saturation instead of 98. : )
04-23-2009, 11:51 PM
Tommy got a customized length trache once. Our local children's hospital gave it to him. It was a Bivona flex-tend (sp?). It had some nice features and some really nice advantages. However, they had no back-up & when they customized the length, and it sat 0.4 mm (yes mm) from his carina.:eek: Tommy is also seen out at Cincinnati Children's Hosptial, and their protocal is that a trache tube should be no closer than 10 mm (or one cm) from carina. So this extra long tube caused him to vomit even more than he noramally did without the flex-tend. Also, the flex-tend has a metal spring like material inside. So you have to be sure not to get x-rays with it in. Needless to say, Ohio replaced his customized Flex-tend with a standard length trache tube. They said there was no need for Tommy to have it despite his chubby chins :D But sometimes I sure do miss that extra length outside of the stoma.
One other problem we have with Bivona...The vent gets stuck on the trache and we can't get it off! We have really had to use that wedge several times due to this problem. So don't loose that wedge if you happen to have a Bivona and a vent!
We have always had a bivona flextend trach- it is the primary one that Childrens Hosp in Pittsburgh uses. Almost every trach kid in this area has it. I really do like it alot better than the shiley-and so does Joseph- It doesnt need to be made customized unless you would need a shorter than standard length on the inside so it doesnt hit the carina- we did at first have a custom length though because Joseph was so small- it took about a week to come in. now I usually get them when I go to clinic visits- The trach RT has a supply of them.
04-24-2009, 07:01 PM
Our pulm is ordering us a trach extender. I never heard of it before, but I guess I will when it gets here.
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