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Darn it, darn it, darn it!

Posted by on Jul. 31, 2007 at 5:25 PM
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Well...we are once again home with a trach.  A smaller trach, mind you, but a trach nonetheless.  We arrived in the Sleep Lab at 7:30 this morning, and by 10:30 Lily had already failed the study and we were heading home.  When she drifts into REM sleep, her airway is still obstructing and she is having difficulty breathing.  She recovers quickly, but obviously it shouldn't be happening at all.  We are definitely disappointed but know that we have to do what is best for Lily.  She is simply not ready yet.  I thank you all for keeping us in your thoughts and prayers.  Lily is doing great and you wouldn't know by looking at her that she went through any ordeal at all.

God bless you always,

by on Jul. 31, 2007 at 5:25 PM
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by on Jul. 31, 2007 at 5:41 PM
sorry to hear she didnt do well but she will get it next time. now a question, i havent had the pleasure of going thru decannulation, what is it that they do that u have to go to a sleep lab?? im just curious so that whenever charlie has to go thru it i will be ready.
by on Jul. 31, 2007 at 7:46 PM
I don't know if it is the same everywhere, but at our children's hospital, we have to be there for at leat 24 hours.  We arrive early in the morning and go to the sleep lab.  There, the respiratory therapist attaches some monitoring probes in various places on Lily.  Then the doctor comes in and we take out the trach and observe for a minute or so how she does.  If she's doing well, then she is monitored in the sleep lab for a couple of hours.  They would prefer she go to sleep, but it's not a big deal if she doesn't.  The first time we went, she didn't, and today she did.  If all goes well in the morning, we are unhooked from everything but a pulse ox, and then we hang out in a short stay hospital room until about 8:00 that night.  We then go back to the sleep lab and the RT puts about a million wires on Lily and they watch her through the night until about 5:30 the next morning.  We are then sent back to the short stay room, they read the results that afternoon, and we are discharged either with or without the trach.  That's how it goes here.  It's a long and drawn out process, but I like it because it shows all the things going on in her that we can't see for ourselves. 
All of these were attached to Lily during the overnight study.
by Member on Jul. 31, 2007 at 9:11 PM
I really hate that for you guys. It is so frustrating! MaKayla had her doctor's appt. and she too isn't quite ready yet, but her EENT is going to do another swallow study on her next month. He says he knows that she can breathe fine without the trach but he is worried about her swallowing because she seems to avoid swallowing anything at all cost. He told me that it really wouldn't matter if it came out she would still have problems. I guess both of us are stuck with our trach girls til the spring, or did he say if he would try another attempt before then? I don't think MaKayla's EENT will try this year but I might try to convince her pulmanologist(sp) he seems ready to decannulate her now so I don't know what to do or who I should listen to. Sorry for the rant. I know you both must be exhausted.

by on Jul. 31, 2007 at 11:34 PM
I'm so sorry you didn't get to finally get rid of the trach. At least it was downsized, though, and that is always a good thing if it's left in.
by on Aug. 1, 2007 at 5:13 PM
Oh no, and I just responded to another e-mail regarding Lily.  What are the go-forward plans?
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