POST CT SCAN UPDATE:

Micah did great. We don't know the results yet - or even if they got the pictures they need to determine if Micah is a good candidate for a stint in his upper left main bronchus but the experience itself was fairly uneventful. They had all the right supports in place and there were no surprises. So thank you for all your prayers and kind thoughts. As soon as we know more about the results from the scan we'll let you know.  But here's a little info on why this CT Scan is so important:
We (his medical team, Micah, myself and his step-dad) have run out of ideas to improve his lung function and he's been getting increasing worse.  A new doctor was invited to have a look and attempted a procedure meant to try and stretch open the nearly completely shut down left main stem bronchus.  It didn't work well.  His instruments were too rigid and couldn't really get into where they needed to go to get the job done. He agreed to meet with some other colleagues of his and see if any other ideas could be discovered and they were.  There are other more flexible instruments  that may be more effective.  It was also thought that it might be possible to put a stint into that stretched opening to force that airway to stay open.  If so - it could mean improved over all breathing for Micah.  BUT (there's always a but - isn't there) he would have to agree to having a trach placed because the stint would need regular maintenance and easy access to the stint would be needed.  A trach would offer that access.  It could make a big difference for him and how he feels on a day to day basis.  But all of this possibility rests on the mechanics of his upper airway which is already in pretty rough shape and THAT is why he was having a CT today.
At this point this is the last idea on the table that is curative.  Any other efforts at this point are aimed at comfort care.  Some have asked if Micah is eligible for a lung transplant and the answer is no.  His doctors have asked twice and twice been turned down.  It's not the sickest people who get transplants.  It's the sickest people who have the best possible chance of the transplant actually working who get transplants and Micah's disease and physiology make it impossible.  His airway (trachea) is to damaged to accept new lungs and there's no way to know if the new lungs would be damaged by his disease since they have no idea what has caused it in the first place.

I will tell you Micah did have some nice visitors today after his CT.  He felt good for a few minutes and the timing worked out for some Super Heroes to stop by at that time.  :)  Wonder Woman was jealous of Superman because he could land anywhere and she always has to submit a flight plan - even for her invisible jet.

Micah's next homework assignment is pain management and sleep. They're trying something different and it's on an as needed basis which often means he waits too long to take it ("I don't feel good I should get some meds." Takes 30 minutes to get it and 30 to kick in now I feel like garbage) and he's always chasing the pain instead of staying on top of it. So we've made a chart to help him know when he can ask for it to help him anticipate his needs instead of react to them. And sleep has been elusive. Tonight? Praying for good, restful, sleep.
‪#‎blessings‬!