Next Steps - Have No Fear

My last update was pretty long but full of information.  You can read it to get up to date here.  The last few weeks have been spent getting Micah settled into his new room and already we've seen positive outcomes!

• His electric and acoustic guitars are now able to be set up along with his amp and his ukuleles are accessible so he has a little music corner.  He meets with a Portland based musician once a week or so for music therapy which is funded through some folks affiliated with Doernbecher.  He seems to enjoy her company and I hear happy sounds of music and conversation coming from the direction of his room.  He's started practicing everyday and is working on some new songs again.  "insert heart emoji here"  :)
• Moving into the larger bedroom affords him the space of about a coffee table to do some physical therapy on his own.  PT is no longer paid for through insurance so if he wants to continue to gain strength he has to do the work on his own.  Micah has made a reminder chart on his whiteboard to keep him on track (making goals!  A great sign!) and he seems dedicated to regular strength training and muscle endurance.  He has some resistance bands and some small weights. 
• Micah has attended church on Sunday a couple of times over the last few weeks and even gave his mom the elbow when it looked like she was using her phone during church.  I was sharing something the preacher said that I thought was particularly meaningful.  That's allowed, isn't it? 

"FEAR IS THE DARK ROOM WHERE NEGATIVES ARE DEVELOPED."

• Pretty good, huh?  And timely!
• Micah is showing signs of wanting to branch out.  Gaining weight and getting stronger has played no small part in his overall attitude and mood.  He's taken a few short walks outside (Hooray for the great weather!) and since his new room is right off the living/dining room we see him coming out to visit with the family more.

 ABOUT THOSE NEXT STEPS
We started a You Caring account (that's like a Go Fund Me but less expensive) to help raise the funds needed to get Micah to the next level. You can check that out by clicking here.  There's still a lot of research to do and we're all working together (Micah, his dad and I) to prioritize a list of needs to help Micah continue to grow and improve. 

• His Physical Therapist provided him with some resistance bands but he has reached the limit of what those can do for him and it's time to add some aerobic exercise.  We're looking into the best options.  A peddling device of some kind has been recommended.  Space constraints limits us so we're looking at everything from a stand alone peddler he can use from his chair to a full stationary bike.  He's also ready for some heavier weights.
• Micah needs 6 liters of oxygen at all times to breathe easy.  His insurance covers large and small tanks and a large floor oxygen concentrator and a portable bi-pap machine.  This is great and has made all the difference in his daily comfort as long as he stays close to home.  The portable tanks last about 3 hours - depending on how much demand he puts on them.  If  we want to take him out for a lengthy outing, say a day trip to a museum or the beach or shopping, we need to take 10-12 tanks.  You always take twice what you think you'll need to be prepared for anything.  And again - don't get to far from your vehicle where they're stored.  Insurance won't cover a portable concentrator that he could carry on his shoulder so we're looking at purchasing one ourselves.  This could open up a whole world of opportunities for Micah as he looks to add activities back into his life like jam sessions, worship team, college age outings with the church, family trips to the beach, college classes... you get the idea.  The right portable concentrator for Micah would cost in the neighborhood of $2500 - $3000.
• Space - the final frontier. Our house is just too small and older, but not the good kind.  It needs a lot of work (which Herb and I are doing as time and our personal funds allow) but it's clear we will need to either add on a space tailored to Micah's unique needs or move to something that has the space required.  Preliminary estimates put adding on a room with the square footage necessary and a bathroom suited to Micah's fluctuating needs at around $25,000.  That's a tall order.  And there's a lot of steps before we place an order like that. Plans, money, permits, money, contractors, money.  You get the idea.  We'll get our facts together and try to make the best and most economical decision we can.  A work in progress.

I want to write more but I have to go for now.  I plan to give you a glimpse into a day in the life this Friday when Micah has his in-home infusion of IVIG.  Until then thank you for praying for Micah.  If you're not already in touch with him one way or another he would love to hear from you.  You can find him here on Facebook.  Thanks for reading, sharing and commenting.  As always - questions welcomed.  God Bless!

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!