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| Pediatric Tracheostomies For parents and caregivers of children with tracheostomies. Please limit discussion to seeking and sharing of information pertaining to tracheostomy care, medical issues, special needs, disabilities, networking and moral support. |

03-04-2009, 11:39 AM
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This is what I mean by "Hard to Sedate"
We took a video of Alex about an hour before he was due to be extubated. It is below. This is what the poor nurses were struggling with during the week Alex was sedated. In the last day, they added a drug called Profenol, which is an anaesthetic (oh ... I can't spell today). (Caty - it is similar to Precedex, which was one they did actually discuss. Thanks for the info.) This drug is so powerful, that it must be administered by a physician in DC because it is not covered by the nursing statutes. It is also a drug that is used in the OR.
Anyway, the day (maybe day and a half) before extubation, they started Alex on this drug so they could safely wean the morphine, versed, and vecuronium without having him wake up. When they made this decision in rounds, they said that Alex was up to "Graduate level sedation". These were the big guns.
An hour before extubation, even the big guns weren't enough. The big question -- is this an Irish Jig or a Polka? Both would be appropriate giving our ancestory.

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Karin
Alex's Mom
Alex born 6/19/2007, PRS, Trached and GTube at 3 weeks, palate repaired 12/20/2007, failed decannulation 5/7/08 due to undiagnosed suprastomal collapse, jaw distraction 9/9/08 (insertion) to 10/30/08 (removal). Single Stage LTP 2/17/09 and now member of the Naked Neck Club. Need a laugh? Check out http://itsallgoodtoday.blogspot.com/
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03-04-2009, 12:25 PM
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Bless his heart. 
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03-04-2009, 12:43 PM
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Karin,
Metabolism issues aside, I'm curious if you thought when Alex was like this he was actually sedated but just jerky. It took us a day or so but there were times when Parker was exactly like this but several times our best guess was that he was, in fact sedated, so we opted for a paralytic to stop the movements.
I ask because I know there are those who will go after us who will be reading this carefully. It is hard to explain how but there were times when we just "knew" that he didn't need more sedation but the paralytic. Conversely, there were times when it was obvious to us that it was the sedation wearing down and it was time to re-up or even switch up the cocktail.
Thoughts?
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03-04-2009, 12:47 PM
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Another question: do you mean Propofol??? The white stuff? Milk of Amnesia? If so, Parker was on that too. I posted about it here because it scared the crap out of me that we had to have several docs explain and sign a special waiver. But it did the trick!
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03-04-2009, 01:10 PM
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I was thinking the Charleston?
It's amazing how differently kids react to meds. I'm glad they got it all sorted out in the end.
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03-04-2009, 01:30 PM
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Suzanne -- good questions. Second first. Yes, I meant the drug you mentioned. I never saw it spelled out.
First next. I read Parker's blog and I thought long and hard about what you said about paralytics, etc. and whether he was really awake. The best nurses we had were checking pupil size hourly to try to make the same determination. There were times where, like you, I was certain that he was sedated but just moving in his sleep. Like Parker, Alex is a restless sleeper.
For the most part, though, it was painfully obvious when he was trying to move that he was not sedated. Most of the time we didn't even have to guess. Sometimes he was just trying to roll over and get more comfortable, but other times he was responsive to commands and questions even in that state. That is part of the reason why they moved to the veck drip instead of the bolus, so it weakened him but didn't paralyze him.
Now, I have to say, that all of this was before the Propofol. After that, it all changed, and in the video Alex is on Propofol. I don't have a video of his other movements, but they were much more purposeful and less random than what you see in this video. So ... do I think Alex was sedated in the video and just jerking? I honestly don't know. We were so close to extubation at that point that they didn't want us close to the bed for fear of our voices rousing him even further. I didn't get a chance to truly assess. It is a very, very good question and I wish I had an answer. I will say there was a different quality to the movements when the drug changed, and you might be right.
For the record, here is why we thought he was not really sedated.
He was like a light switch before the Propofol. He was either awake or asleep, and until the veck drip, they had no warning. One minute he would be laying there, and the next minute three of us had to hold him down to keep him from sitting up in the bed. After the veck drip, it never got that bad again. They could anticipate his wakefulness better because he was not able to thrash as hard.
Also, he was throwing off the Veck at 3x the typical rate, so they were estimating that he was throwing off the sedation meds at that rate as well. It took 3 boluses of Veck to try to get him through an attempted PICC line. One should have lasted an hour, but it only lasted 20 minutes.
The biggest clue we had, though, was how responsive he was to the noise and voices around him. When the medicine was getting close to being due, he would hold still more if we were there to hold his hand. If DH or I walked away from the bed, he would reach his hand out to us (eyes still closed) and try to find out where we went. At one time the nurse even tried to talk to him to get him to open his eyes to see if he would -- testing the meds level again. When his movement would get acute (like the video, but sometimes worse), he would often twist his face into a pained expression and tears would come from his eyes.
One night, too, one of the nurses came and asked me if Alex liked to dance. Odd question, right? I said yes, he dances a lot at home. She told me she had to turn his music player off because it looked like he was moving in time to the music and she thought it was waking him instead of soothing him.
All in all, I have to say it was a pretty scary time. The "Milk of Amnesia" was truly a blessing and a relief for us -- for the 24 hours that it worked well. I don't think we could have gotten through this without it.
In a nutshell, I hope, hope, hope that he really was sedated more than he seemed. In my heart, I don't believe it. His movements were, until the Propofol, very purposeful. (For example, he tried to pull out his ET tube and rip out his IVs.) After the Propofol, it was a different story. He didn't lay still after the first day, but his movements were more random, like the video.
I hope this made sense.
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Karin
Alex's Mom
Alex born 6/19/2007, PRS, Trached and GTube at 3 weeks, palate repaired 12/20/2007, failed decannulation 5/7/08 due to undiagnosed suprastomal collapse, jaw distraction 9/9/08 (insertion) to 10/30/08 (removal). Single Stage LTP 2/17/09 and now member of the Naked Neck Club. Need a laugh? Check out http://itsallgoodtoday.blogspot.com/
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03-04-2009, 01:53 PM
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Suzanne -- question for you. Was Parker restrained? I didn't think to mention this, but Alex is restrained in the video. Only his arms, I think, at this point.
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Karin
Alex's Mom
Alex born 6/19/2007, PRS, Trached and GTube at 3 weeks, palate repaired 12/20/2007, failed decannulation 5/7/08 due to undiagnosed suprastomal collapse, jaw distraction 9/9/08 (insertion) to 10/30/08 (removal). Single Stage LTP 2/17/09 and now member of the Naked Neck Club. Need a laugh? Check out http://itsallgoodtoday.blogspot.com/
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03-04-2009, 01:55 PM
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Yes, Karin, it makes sense to me. I wasn't really questioning your judgement (Hopefully you know that!) I just wanted to draw it out of you in detail while it is fresh so those that are watching can see some of the issues. I can't remember a lot of specifics about what Parker was doing or not doing that made us think he was sedated or not sedated so I wanted to hear your thoughts.
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03-04-2009, 01:59 PM
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Quote:
Originally Posted by suzanne2545
Yes, Karin, it makes sense to me. I wasn't really questioning your judgement (Hopefully you know that!) I just wanted to draw it out of you in detail while it is fresh so those that are watching can see some of the issues. I can't remember a lot of specifics about what Parker was doing or not doing that made us think he was sedated or not sedated so I wanted to hear your thoughts.
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Yep -- I knew exactly what you were trying to do.  Great idea.
__________________
Karin
Alex's Mom
Alex born 6/19/2007, PRS, Trached and GTube at 3 weeks, palate repaired 12/20/2007, failed decannulation 5/7/08 due to undiagnosed suprastomal collapse, jaw distraction 9/9/08 (insertion) to 10/30/08 (removal). Single Stage LTP 2/17/09 and now member of the Naked Neck Club. Need a laugh? Check out http://itsallgoodtoday.blogspot.com/
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03-04-2009, 02:20 PM
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Lord, Karin. I bet his nurses are still having nightmares. Nate's problem was he couldn't breathe on his own with the morphine so that's how Precedex helped him. I really wouldn't have ever fathomed a kid moving so much while sedated. wowzers.
And I think he's doing the new Hip Hop move that's popular in all the Zumba classes: The Alex. 
__________________
~Caty
mom to Bo (4/05) and Nate (3/07 ~trached 2/14/08 for resp. failure secondary to congenital hypotonia~vented while asleep)
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