View Full Version : Felicienne retrached
04-09-2002, 04:29 PM
I think Noella is right!! That is awful! I think your experience is everyone's nightmare. We are so afraid to get our hopes up because when you come crashing down it hurts so badly. It is hopeful though that she lasted that long. Out of curiosity, did they have to cut her again, or was the stoma (hole) still open? Sue
04-09-2002, 05:43 PM
Hi, I know exactly how you are feeling. My son was decannulated last Sept. for 6 days and had to be retrached. We got our hopes up because his doctors said that his tracheomalacia looked to be gone, then we discovered that he has vocal cord problems and that is why he had to have the trach put back in. So again we play the waiting game, but, if you look at the bright side of this, our kids can breath. I would rather have the trach in than to watch my child struggle to take every breath.
04-09-2002, 10:17 PM
Unfortunately, I also know what you're going through. Lily got decannulated on March 27. It's what we had been hoping for, praying for, dreaming about, holding out for, etc. She did great while she was awake, and it was SO amazing to have a trach-less baby who could sigh, coo, giggle, etc. But as soon as she fell asleep she would have obstructive apnea episodes. We immediately recognized this as what she did when she was born, but nobody listened to us. We went home on March 29 and ended up back in the hospital 12 hours later after Lily stopped breathing while sleeping at home. We had to really pressure them to put her trach back in, but they finally did 2 days later and we went home the next day. It's been a depressing few weeks, but we were actually *happy* to see the trach back in after watching her struggle for 4 nights. We are just trying to look on the bright side (I said "trying"): at least Lily is 50% there and hopefully we can try again with 100% success. I'm sorry you're going through the same thing we have been. Maybe "next time" will work for all of us!
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