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.
-----------------------------------
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.
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!