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!

Turning Point

It's time to pull this blog off the shelf and dust it off.  This summer has marked a turning point for Micah with twists and turns and new challenges so I'd like to start sharing his story again.

 I stopped blogging for lots of reasons mostly time related.  If I made a list of all the things you would be tempted not to believe me.  Mostly, however, Micah leveled off for quite a while and managed to find some independence, a girlfriend, and a home of his own.  I moved to the background as far as his day-to-day care was concerned and with his permission moved on to other projects like my other kids, the Donald Hazelnut Festival board and planning committee member and helping care for my husband's mom who had been diagnosed with dementia.  Those are different stories not meant for this blog.  This blog is about Micah.  So here we go... I'll write as often as I can.

Bumpy Summer / Autumn of Change

Micah was home only a week after his 1 and a half long hospital stay and it was back up to the Emergency room at 2 AM on Tuesday morning.  I had two molars pulled only 12 hours earlier and was a bit distracted with the pain and swelling but we bumbled along because we had to.  He was de-saturating on his home oxygen set up and dipping towards the upper 80's fast.  We spent the night in the ER and the next day in pediatric ICU catching naps in-between the hospital staff visits.
He was moved from ICU Wednesday to the regular floor in Doernbecher and seemed to be tolerating it fairly well. He looked tired and uncomfortable to me much of the day with a few highlights of a fun physical therapy session and a visit from Great Uncle Steve and Great Aunt Diane.
Today is an important CT scan of his upper airway which, for Micah, is less fun then the average CT. He doesn't lay on his back - it's too hard to breathe. So it comes with added anxiety to perform this task.
Today's prayer request:
His CT is scheduled for 1 pm. He needs to have everything go smoothly. No technical difficulties, and competent staff and support staff. It needs to be relatively on time because the not knowing and good timing of anti-anxiety medication really makes it easier.
He needs calm breathing and no coughing during the CT so they get the important images they need the first time.
A sense of peace and safety for Micah.
Then tonight? Sleep. He needs long, uninterrupted sleep.
I thank God for you all and your love, support and faith extended on Micah's behalf.
#blessings