Its me again!

Well I got ahold of all of her paper work and records yesterday and they say she has/had subglottic stenosis and I know Ive seen several of you who have that in your signatures. OK so I have my first question, I am the paranoid new mommy now home with my newborn (only shes actually three) *grin* so please bare with me. I know I have so much to learn I am calling her Dr today to set up an appt and hopefully that will be a good starting ground. Anyway. So she had reconstructive surgery last Sept, I was told our biggest issue we need to watch for is if it sounds like shes having a hard time breathing or congested, to call Dr if she does and it could be a sign of scar tissue? Well last night as we were getting ready for bed she sounded SO congested, but her former FM wouldnt answer the phone. We just went to bed and she is better sounding this morning. Can someone try and explain this to me? When is it ok, and when do I do something? Im so confused Â* I know atleast a few of you are lol at me, Im just a new mommy and I dont really feel like I have a good grasp of whats going on. I am NON alarmist by nature and I dont want to overlook anything that could really be serious.


MommyNay
Dp: Shana
BD: Olivia(3)
FD: Jordan(3), subglottic stenosis trach'd 4/03, reconstructive surgery 9/05(adopting!!!)
FS: D(5months)
FS: R(11months)

[Hinchfamily]

the signs they told us to look for are retractions in the chest and nasel flaring.

Didi they give you any repitory drugs to give her in case of an emergancey?

Thanks Alison, no they didnt send me home with any meds atall. ::sigh::

[sandra]

I would be concerned if it sounds like her breathing is labored. A wheezy sound that is not down in the lungs if you are worried about stenosis. You might want to get a stethescope so you can listen. Nasal flaring and chest retractions would also be important to watch for. I don't know why they were as concerned about congestion, except that it could be a sign of illness. All kids are going to sound congested from time to time.

Others will know more about this than I do, since Brian didn't have stenosis. He did have a granuloma that blocked a lot of his airway and he had a wheezy sound and just looked like breathing was hard.

[liz]

Keep watching and listening. You will soon learn what is a problem and what is not. It's ok to call the doctor a lot in the beginning - they take respiratory issues VERY seriously, I can tell you. Do you have a pediatrician, nurse practitioner or specialist close by, you can trust, and that is relatively easy to see? It's good to develop a relationship with a medical professional who really knows your daughter and can spot trouble signs. It does get easier - people on this board will tell you that. Good luck to you.

Liz

[JWorthington]

Glad you have got her home. We have not had a subglottic stenosis dx, but I would advise you to watch for nasal flaring and chest retractions as Sandra did. Also, keep an eye on her colour. Do you have a pulse ox? That would be useful.
Julie