Hope Deferred Makes the Heart Sick

Last week was seriously busy with meetings tests and new ideas. It was really overwhelming.  Here's a quick update.  Apologies to my grammar junky friends. I wish I had the time to be a good writer but I'll have to settle for just getting it on virtual paper.

It all started with the care conference with Micah's doctors and other specialists on his team early in the week. Here's what we talked about in that conference:

• Micah's most recent CT scan it appeared to show his left lung was not getting the blood flow that it should so the team wanted a nuclear scan of his lungs to get a better picture of the blood flow on both sides of his lungs. 
• This was important because there has been discussion by his otolaryngologist about trying to open the left main stem to increase Micah's access to that lung which is basically almost completely shut down due to the main airway being narrowed at the top. There's a few ways they could do that:
•  Putting a stent in that upper left bronchus might hold that airway more open than it is now but means Micah would have to agree to putting in the trach which you can read about in my previous post. Both the stent and the trach introduce new opportunities for infection on a regular basis.  There's also the risk that because the airway is already so narrow and the stent has its own thickness perhaps the scarring wouldn't allow the stent to stay in place.  It could shift.  Or the additional scarring could grow up around the stent making the airway worse not better. Not a small thing to decide.
• Using special tubing and a balloon to go in and stretch that narrowed area. But the scarring is pretty severe and very stubborn. The risk here is that the area could tear causing irreparable damage to his airway which would be fatal. 
• Going in with the laser to try and cut away some of the scarring to open up that airway. I'm sure you can figure out all on your own how dangerous it is to put a laser inside of an airway. One wrong move and the laser could cut right through the airway wall and believe it or not there's also the potential for the patient to catch on fire. (Terrifying.)

• That said if the nuclear scan shows the blood flow is inadequate to the left lung, opening up that airway could cause more problems that it would solve. The demand for blood which had never been there before would be too great and would create another set of problems.

Some of the other interventions were more basic and less scary.

• Micah has diverticula in his windpipe (potentially dangerous but stable thank God) which they've determined have worsened somewhat overtime and this could be the source of some of his pain. They decided it was time to bring in the pain team to help Micah manage his pain better for the long term rather than Band-Aiding with short-term pain management. (Finally!) I didn't even know there was a pain team. 
• Anxiety has been a real ongoing issue and rightly so. Imagine feeling air hungry all the time. They decided to consult with psychology to see if there were some better solutions for Micah.

RESULTS

The Bad: The nuclear scan came back showing Micah's left lung has only 18% of the blood flow it should have.  The Otolaryngologist consulted with his colleagues in Cincinnati and it was unanimous.  There are no surgical options left for Micah at this point. This was a real blow to Micah and he took it very hard.  Opening up that airway could have made a big difference in how he feels every day and he was holding out a lot of hope for what that could mean.  I'm sure it felt like all the hope was suddenly taken from him.  This is as good as it gets. I can tell you as his Mom I've never seen him so low or angry.  He's not an angry guy - if you know Micah you know that.  But this was more than he was able to bear.

The Good: Psychology and the pain team definitely had some ideas.  Some adjustments were made to anxiety medications that deal with air hunger and a new longer acting pain medication was prescribed.  So while Micah grappled with the bad news about any operative solutions for his lungs the new medications were kicking in.  By the end of last week Micah was no longer asking for additional meds for break-thru pain and/or anxiety. He was starting to spend more time off the bi-pap machine and on regular oxygen from the tank and for a few minutes here and there - off the O2 entirely.  He started getting out of bed more, going for longer walks and doing more things for himself.  It has made a significant difference in his day to day which has in turn had a very positive affect on his attitude.

And Now: Micah came home last Friday and is doing so much better than he has in months!  He's helping with his own meds, and coming out of his room to eat at the table and even went out to a movie with his Dad, brothers and myself followed by dinner out!  He was pretty worn out by the end of it but he made it and he felt good about it.  Next Sunday we're going to give church a try.  He hasn't been able to go in a LONG time.

What's Next:  At home Physical Therapy and Occupational Therapy, on-site Pulmonology Therapy (specialized bikes and tread climbers, etc with respiratory support) and hopefully - avoid illness!  Micah's room is quite small and barely contains all his medical equipment and our house doesn't have the extra space needed for optimum physical therapy.  Keeping Micah strong will mean doing the work every day and involves more than therapy.  It means having space to play guitar and rekindle friendships.  We're looking to add a room to our house especially designed for Micah's needs so we're going to be starting a campaign to raise the money, donated labor and materials to get it done as soon as we can.  So far the plan is working and he's getting stronger than he has been all Summer and we want to make sure he has every opportunity to make the most of the time he has left.

Thank you everyone for your prayers and support.  We are confident that your prayers have made all the difference.

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