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llwilliams8
03-21-2009, 07:21 PM
Hello everyone,

I have been reading posts for the past couple of weeks but I was am just now able to post. YEA! I have a 6 month old daughter who has spina bifida. She has a Chairi II Malformation which has caused her to have central apnea. After a failed attempt to help the malformation with a decompression surgery we decided that the only other option would be a trach. She was trached and got a Mickey button in November and we were able to finally bring her home from the hospital in January. She is on a ventilator 24/7 since her brainstem does not always signal her to breathe and you never know when she will stop breathing and desat on us. We also have 2 other kids as well so it has been an adjustment but we are so blessed to finally have her home.

I look forward to getting to know everyone and to learn so much more about trachs, vents, and just being able to talk to people who truly understand.

Lacy
lynn
03-21-2009, 10:59 PM
Welcome!
Niff
03-21-2009, 11:56 PM
Hey Lacy. :) Glad you found the board. I must have gabbed about it too much on my blog? lol
llwilliams8
03-22-2009, 07:21 AM
Hey Lacy. :) Glad you found the board. I must have gabbed about it too much on my blog? lol

Yes, thank you for that. :)
alizesmom
03-22-2009, 11:10 AM
Welcome Lacy. Jump right in, these are great friends to have. Karen
kirafaesmom
03-22-2009, 11:14 AM
Welcome! I think you will find that this group is amazing...very knowledgable and supportive.
La Belle-Mere
03-22-2009, 12:26 PM
Welcome, it is great you found this place.. just haing a place where other people understand is amazing.

We have 2 teenage girls who are also on trach & vent 24/7.
Mom2TwinsPlus1
03-22-2009, 04:00 PM
Welcome to the boards, sorry I didnt post HI earlier.

Your daughter sounds a lot like mine, she is also vented for apnea. But her brain stem shows fine on MRI and catscans so they can't explain it.

In your other post about breathing treatments, it reminds me a lot of my daughter Emma. Her lungs are fine too. We were able to stop treatments like I said after we were vented. I hope you guys can too.

I thought adjusting to a vent would be terrible, but with 2 other kids as well it has made life so much easier not having to call 911 and go to the hospital all the time. I love her vent now. Makes like a little easier and less worrisome, gives you a bit more work to do too but you get used to it and it is well worth it
JWorthington
03-23-2009, 04:33 AM
Hello Lacy and welcome, this is a wonderful, supportive place where people really 'get it'. glad you could join us:)

Julie