Pulm Appt

[bryantem]

Our Pulm appt was very productive. He wants us to start weaning her O2 by keeping her sats AT 92, which is very doable because she sats at 96% when she is on the lowest setting. He increased her aldactone, told us to quit giving Xopenex unless it is really needed because it can make her malacia worse. He decreased her prednisone and told us to give her one dose per 24 hours in the morning. He also told us to downsize because she has no leak. He is worried that if she has a plug, she won't be able to breathe at all and will quit breathing. It will also help with her PMV trials. Things went really well and I think we will be off the oxygen in no time. He also reiterated that he thinks she will be very short-term on the trach.

On a funny note I saw a note on the wall in the office from Ann- it took me a couple seconds to put 2 and 2 together when I saw the name.
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Mazda Premacy And Mazda5 Specifications

[suzanne2545]

Productive appointments are ALWAYS good! Can you tell us more about the xopenex/malacia connection? I'm very interested.

[bryantem]

From what he said, there are smooth muscles in the trachea and bronchus. The Xopenex/Albuterol works to relax those smooth muscles. When there are issues with Malacia, kids need all of the smooth muscle that they can get.
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BMW 2002TII HISTORY

[Ann]

Originally Posted by bryantem

On a funny note I saw a note on the wall in the office from Ann- it took me a couple seconds to put 2 and 2 together when I saw the name.

Small world, eh? I need to get Jack in. They wanted to see him Feb/Mar, but it looks like it will be April/May. Glad you had a good visit.

[JWorthington]

That sounds good - hope you are soon O2 free and the trach follows soon after!

Julie

[bryantem]

Originally Posted by Ann

Small world, eh? I need to get Jack in. They wanted to see him Feb/Mar, but it looks like it will be April/May. Glad you had a good visit.

We will go back in April too- and I assume the month after that for a while. So far her O2 weaning is going well. She was .3 with the mist collar last night.
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J Mays

[babybear]

That sounds like fantastic news!!!!

[KJKK8437]

Originally Posted by bryantem

From what he said, there are smooth muscles in the trachea and bronchus. The Xopenex/Albuterol works to relax those smooth muscles. When there are issues with Malacia, kids need all of the smooth muscle that they can get.

Suzanne -- this s the same thing Alex has (had?) to extremes. The albuterol/xopanex relaxed the smooth muscle so much that the trachea just flopped shut. Atrovent counteracts the effect and (I understand) is effective in most kids when given together (like in the drug Duoneb) -- but not in Alex's case. Basically, kids with malacia have a generally floppy airway, and relaxing it further can make the condition worse. Having said that, we are still authorized to give Alex albuterol in life-threatening emergencies. There is a point at which it will always help, and a point after which he "doesn't need it enough" and it will hurt more than it helps. The trick is where is the line.

Now, what I have wondered is now that Alex has had the LTP, would it make a difference? I actually think not. I think the "acquired malacia" probably had little or nothing to do with it in Alex's case, because the collapse was above the trach tube. So, if the trach was in and not plugged, it shouldn't have mattered.

This has always been intruiging to me, because other than the collapse, Alex really didn't HAVE malacia -- so he drug shouldn't have had this kind of effect on him. It was in his chart that he had malacia, because one doc thought he saw it on a flex scope, but if he had it, it cleared up miraculously and was not evident whatsoever by the time we were scoped by the new doc to see if he was an LTP candidate.

Go figure, right? Anyway, atrovent is our drug of choice until Alex is a great deal bigger and can handle whatever the drug does to him with a bigger airway. Hope this made sense.

[drct1245]

Sounds like a GREAT appt - YEAH!!!