Spring Forward (Some Assembly Required)

Friends on Facebook may have seen little bitty updates on our lives since "the big change" in the Autumn.  This new lifestyle is pretty busy but I owe you all an update.  I apologize for the delay.  So, here's what's happening.

WHERE WE'VE BEEN 

The Fall and Winter were spent adjusting, adjusting, oh, and adjusting.  Here's an excerpt from the last blog post dated Nov. 11, 2015 to refresh your memory:

 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.

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.

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The first few months were really difficult.  I'm not going to candy-coat it.  He was scared. He felt terrible and weak much of the time even with access to the oxygen around the clock.  He needed me to handle every single aspect of his care and could barely walk to the bathroom right next door to his own room.  Micah often asked me to sit and just be with him because the anxiety was so great.  The bi-pap alarms would go off repeatedly during the night and we struggled to figure out why.  It was a bit like having a newborn in the house again.  Sleep was at a premium and most of my day (and night) was focused on his care.  But that's what we signed up for in order to try to bring Micah back from the brink. Hospice began to visit to see if their services were appropriate for him.  I welcomed them to visit with Micah but I was resolute - we would not be needing them anytime soon.

WHERE WE ARE NOW

Micah did the work.  We all really did the work.  Nurses, physical therapists and occupational therapists came regularly for months working with Micah to help him regain some strength and stamina while I provided him with support with this prescriptions, meals, bi-pap machine, g-tube feedings, insurance paperwork and appointments with all those professionals.  As often as he could - almost daily - he would do the homework given by the therapists. First with just stretches and exercises to improve his balance and rebuild muscle mass. Then adding small amounts of weight.  All of it has worked to bring Micah from terrifying conversations like "maybe we should bring in hospice" to "you look really good!"  Micah went from an 110 lbs average weight, unable to maintain an appetite and often feeling to ill to eat to getting his appetite back and with consistent night calories from g-tube feedings to a whopping, healthier 147 lbs!

We did our best to squeeze all his medical equipment, supplies, physical therapy tools and personal belongings into a 10x10 room.  There are five of us living in this 3 bedroom 1.5 bath house and it can be done but there's no margin for error.  Micah has a folding chair in his room we keep for his visitors (mostly medical personnel) and we can fold it up when not needed making it easier to move around the equipment.  It's like learning to live in an RV.  You get VERY creative with space saving.  Nothing can be left out or laying about.  One challenge we couldn't overcome is Corban, Micah's little brother, doesn't have a room so he has to share with Mom and Dad.  He's 6 so as you can imagine - that's becoming even less ideal every day.  But the worst of it was that there was no room for Micah's guitars.  NONE.  They stayed put away and put up because there just wasn't an inch of room.  This meant he was a LOT less likely to play or even feel like playing.  It was just too much effort to even pull out and open the case.  I think this was a source of much of Micah's sadness.  Just not much reason to get up in the morning.  Nothing to inspire him.

One move we did finally make just this week was to have Micah swap rooms with his sister.  Her room is a little bit bigger in exchange for a smaller closet but the extra floor space was definitely needed. I tried to do this earlier but Micah had his reasons to stay in the smaller room - one of which was the proximity to the half bath - it would be further away which was unthinkable just two months ago. But the move has been made (almost done) while Micah is in the hospital for a tune-up (more on that later) with his approval.  It is going to make it possible for me to set up his guitars in a corner so they're ready to play whenever he feels the urge.  I'll have a little more room to move around his space so he won't feel like I'm about to fall on him every time I move from the oxygen concentrator to the medicine shelf!

BOTTOMLINE

The effort has been worth it.  Selling our business, moving Micah in with us and making his care our primary focus has brought about the improvements we were hoping for. so Micah is now more stable and ready to take on what's next.

Micah is ready for the next level.  He's reached a point in his recovery where he can take on more aggressive physical therapy. This means exercise equipment (read special pedaling devices) and weights.  Insurance doesn't cover this and they no longer cover the cost of physical therapy so that's on us.  I've come to learn that insurance is meant to keep people from dying but it doesn't have any interest in helping you be as healthy as you can be if you're disabled.  So once you're "stable" their work is done.  We're grateful for all that has been provided and the effort of the therapists and nurses but now that they've completed their assignments it's time for the rest of the work to be done - to get Micah from patient to having a life again - to contributing and being involved in the world again like he wants.  

It also means he'll need more space for this equipment.  We expect Micah to be on oxygen for the rest of his life and this means a concentrator, bi-pap machine, filters, tanks and more tanks, hoses, jugs of distilled water and more. Plus his IV pole, two pumps, IV supplies, refrigerated medicines which means he needs a refrigerator and the space to keep it nearby.  Then he can also keep his specialized high fat/ high calorie diet nearby as well and out of general circulation (if you know what I mean).  Cases and cases of formula for his g-tube feedings.  Ideally he would have a room with a private bathroom with a specialized tub/shower made to support people like Micah and a kitchenette because there is equipment that has to be sterilized every day and a frequent need for water and rinsing and washing.  I carry a lot of "stuff" back and forth to his room several times a day.

This disease is insidious.  Micah may continue to improve with all this effort.  We've seen good results so far.  Or the next illness may be the one that causes his one partially good lung to collapse.  I don't want to talk about worse case scenarios or planning for what that looks like here.  Currently, we want to focus on providing Micah every opportunity to have what we all have - a chance to make a life.  Who knows - maybe if we keep pressing on Micah will be able to take on more and more of his own care and feel the sense of independence we often take for granted. For as long as he can.

 Micah has been in the hospital for a quick tune up the last few weeks.  He started to feel poorly and then he had three wisdom teeth start to come in but they were impacted!  TERRIBLE pain.  Poor guy.  There was no relief. No oral surgeon wanted to take him on with all his underlying condition so the docs admitted him.  While waiting to get his teeth pulled as an inpatient (OHSU has an oral surgery department!) they started treating his illness but the delay from the oral surgery gave whatever it was in his lungs a chance to dig in so a longer stay was needed.  He looks great now and is coming home TODAY!  :)

Thanks for reading.  I've written so much but of course there's always more.  Please feel free to contact me with comments or questions.  Part of my goal here is to educate.  The world of disability is a mystery to some and I'm happy to answer your questions.
Thank you for your prayers and kind thoughts. You make a difference!

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.

G-Tube Surgery

Micah had surgery to put in a feeding tube this morning.  It went very well.  We were reassured that it's a very routine  surgery (we knew that) and they do them all the time.  But of course it's not routine to us and Micah went in fairly anxious.
But now he's recovering back in his room with the aid of some morphine and after some time and rest (and more morphine) he'll try a tubefeeding later today.  The pain is still significant at this point.

He will have to stay for at least a couple of days to make sure everything is working like it's supposed to. Then they'll add a regular diet and make sure he does well with that before he can go home.

The look on his face during early recovery seemed to contain several emotions.  But mostly he seemed to be protecting his incision and looking upset like "this isn't what I thought it would be like".  I have to assume it would be a little freaky to have a port in your belly. Don't you?

I'm sure you have questions.  I did. Feel free to ask.

Micah Update & TGI Child Life!

I just got off the phone with Micah.  He was busy having a nebulizer treatment so we didn't talk long. He has these treatments very regularly in the hospital and it's an important part of his health plan both in-patient and at home.  It's difficult to have a conversation during the treatment because he needs to keep the mouthpiece IN his mouth and it's very noisy over the phone.  So I'll call him back later.

His mood seemed pretty good though and it sounded like he had some company.  Kim from the Doernbecher Child Life program (click the link and scroll down to see her - third from the right & one of the best listeners I've met up there) was hanging out with him while he plays his guitar.  She's been a big part of our lives ever since Micah first started spending time at Doernbecher.  She has been there with us through some very dark times when Micah didn't have anything nice to say to anyone.  And when I was the last person he wanted to talk to - she was there.

One of the services Kim and her fellow staffers provide Micah is tools to keep him occupied.  I'm guessing most people don't know that Micah is usually under house arrest when he's at the hospital.  That is to say, he isn't generally allowed to leave his hospital room.  A few years ago one of his labs showed he had MRSA in his system.  Since this can be very dangerous to some, especially Cystic Fibrosis (CF) and cancer patients undergoing treatment, his germs need to be contained.  Hospital staff have to wear special gowns and masks anytime they enter his room and these are discarded as they exit the room.  This helps protect other patients from cross contamination.  His labs have been clear of MRSA for the last few labs but once it's in your file it is very difficult to get the hospital protocols removed.

So for years, every hospital stay, (which is on average two weeks long) Micah is not allowed to leave his room.  Can you imagine being trapped in one room for 12 days with nothing but limited cable and a DVD player?  That's sounds great to me - for about 3 days.  To a seventeen year old young man?  That's jail time.  So that's where Child Life and Kim come in. They'll loan him a laptop to get online, or an XBox or Playstation and movies and games to play and sometimes even a video camera with which he gets creative.  (More on those later.)  In the last few stays he has finally been allowed to leave his room as long as he wears a mask.  But he still has to stay away from, and out of the rooms of, CF patients which it turns out are many of the kids his age that are up there.  So loneliness is still a problem.  Kim and her team sure give it their best though and I for one have been very grateful.  It gives us something to do and talk about that isn't the elephant in the room disguised under all those tubes and wires and clicking and beeping machines.  Stupid elephant.

Micah Dron - It's Time to Talk

This blog is about my son, Micah Dron.   He is 17 years old and he has bronchiectasis .  My reasons for writing about Micah and his life are many.  Its a great way to keep family and friends informed.  Its a tool to help me process all that is happening in Micah's disease and treatment and all the thoughts and feelings that go along with it.  But at the top of that list is that the years allotted to him will be fewer than most people get and you may never have the chance to get to know him. And Micah is a person who should have a chance to be known.

Now, I'm no writer. So this blog will not be eloquent by any stretch. I will say things that might not make sense to you. I may vent.  I may yell.  I may cry or celebrate.  I may tell stories or just give information about the latest developments in his treatment.  It's hard to say. 
I am a Christian and you will see faith as a central theme in my philosophy but that does not mean I always play nice.  Terminal illness is mean.  Sometimes I am too.  I apologize if I ever offend with my choice of words or language. It's not my intent to be offensive, but to just tell it like it is.  Open & honest communication. Sometimes raw and sometimes painful, but very real.
Maybe our story will educate you.  I hope you find some comfort or redemption in these ramblings.  The best I could hope for is that someone gain from our experiences.  But in truth the most I'm looking to do is to talk about my son, Micah while he's still here.  Because my Micah is a rock star.