Wednesday, July 23, 2014

Yea for Simple Fixes (We Hope)

1500 Days!!!!
Yeah, I know it's been a while, and yeah, I know this is going to be short on pictures.  But bear with me.  'Cause the other option is that there may never be another post done.  Just the way life is going right now.

Both Aaron and I have had some health challenges the last couple of weeks.  But maybe, just maybe we have fixes for both of us.  And fixes that won't involve multiple studies, hospital visits, and so on.  Yeah, we don't get too many of those, especially with Aaron.

He's been struggling with his oxygen.  Yes, again (still? always??).  Not huge amounts.  Just enough and frequently enough to make me sit up and take notice.  And then we've also been using his rescue inhaler for his asthma, quite a few times in fact.  So I got to thinking about what's been happening.

Some background, he uses two different asthma inhalers.  One is his rescue med, his albuterol.  We use that when we're in trouble.  The other is his controller, or his maintenance med, his Advair.  My understanding is that one comes in two different doses.  Aaron's is the highest.  And he gets two puffs twice a day.  That is A LOT!!!  So the pulmo wanted us to try to wean him down a bit, and I was all for it.  Two weeks ago we went to one puff in the morning and two in the evening.  Apparently it took a little while to catch up with him.  By Tuesday though, he was trying to get his message through loud and clear.

I had told Andrew and Michael we'd go play at Seven Peaks on Tuesday and arranged for a nurse to come in.  But by that morning, I wasn't leaving, or at least going very far.  He was just needing too much oxygen and too much rescue on Monday.  But after talking to our trach whisperer, we put him back on his two puffs twice a day and also added in his albuterol on a schedule for the next two days.  Guess what?  It worked!  My high maintenance baby wants to make sure he stays that way.  And what this kid wants, this kid gets.

These two cuties have been hanging around our yard
the past few days.  Kinda nice as they're helping trim
the grass that we can't get 'cause the string trimmer
broke, again.  Simple fix, maybe?
Then there's me.  Two and a half weeks ago we were without a nurse for the night.  So I threw a mattress on the floor to try to catch some catnaps between his meds and stuff.  One of the times I got up, the room went completely off kilter.  I mean, I don't think I could have crawled if I needed to.  That was the worst time, but I've had four to six spells per day since then.  Not a lot of fun.  I was seen today by an ENT who's fairly certain it's some loose crystals in my inner ear.  He did a few tests and they were fine.  I didn't realize he was testing just the right ear.  Then he repeated them the other direction.  Hold on!  Literally.  I mean, the table didn't move, but I felt like I was going to fall off it.  So he moved my head around a bit and I think, I hope, we may have had some success.  I get to sleep somewhat sitting up for the next several days and then go back next week.  If it's all resolved, great!  If not, well, I guess we get to cross that bridge later.

But again, here's hoping it's the simple things.  Aaron's oxygen needs stay where they're supposed to, and the earth stays spinning the way it's supposed to, and not off it's axel like I think it's been.  That would be really nice.

By the way, Michael just asked me how many days Aaron has been alive:  1500 today!!

Everything should be made as simple as possible, but not simpler. 
~Albert Einstein

Friday, July 11, 2014

The Boy Who Lived...

My Harry Potter imitation.  Yeah, I'm the "boy who lived,"
too.  And Mom says I've got magic, even if she's a muggle.
Four years old, four and a half years of love and inspiration, of learning and growing.

We were talking the other night about Aaron's birth with my sister who acted as point for letting my family know what was happening.  (She was house sitting for my parents and I didn't have to look up that number.)  As we were talking, William shared some things I don't think I'd heard before.

I knew he wasn't breathing when he was born.  I didn't know that as the team worked on them, they started to get worried, too.  But he did it, he took that first breath, and then a second and a third.  And four years later, he's still breathing, mostly on his own.

And over the last two weeks, he's pulled another trick out of the bag.  Anyone who's followed us knows that the common cold, rhino virus, is the bane of my existence.  I'd almost rather have pneumonia.  At least we can do something about that besides just trying to support him while he works through his symptoms.

Well, for those who don't know, hospitals are nasty, germy places.  They try to keep them clean, try to heal people, but the simple fact that sick people are there mean so are the germs.  And while we were there for his adenoidectomy, he managed to pick up a cold.

Now, the reason we took out his adenoids was to (hopefully) reduce or even eliminate his constant ear infections.  For us normal mouth/nose breathers, it would also have the potential to improve breathing.  But remember, Aaron has a trach.  His nose shouldn't play into it.  Except, it does.  Within 24 hours of surgery, his oxygen needs dropped to 3/4 of a liter.  Yeah, less than one.  We haven't seen that in over a year.

The next day though, the snot started.  And kept coming.  And coming.  And coming some more.  I felt like I was sucking the poor kid's brains out of his nose!  And true to form, his oxygen needs went up.  But because they were already so low, we could support it!  I think I bumped five liters, twice.  And he's been great!!  I didn't dare put this up earlier, 'cause I was afraid of jinxing myself.  But given that our last symptoms were last week, I think we've done it!

Yeah, my little neck breather apparently does breathe through his nose.  My mom reminded me that through his whole life Aaron has been doing things he's "not supposed" to be able to do, so why should he stop now?  And isn't that a great thing?

Last week, a few of the kids went up to Fantasy Con.  Andrew picked up some Harry Potter glasses while he was there, and then tried them on Aaron.  Yeah, I think "the boy who lived" should apply to Aaron as well.  It's love and faith and the support of so many that have kept him alive.  And I think that may also be true for all of us.

Love cures people—both the ones who give it and the ones who receive it. ~Karl Menninger


Wednesday, July 9, 2014

My Country, 'Tis of Thee

Last Friday, the Fourth of July, our Independence Day, I took the children that I still had at home and went down to a Colonial Village.  I feel it's important for each generation to have some idea of where we came from.

I want them to see the Mayflower, play the games that the kids played (when they had time), see the uniforms, feel the yoke of the water carriers on their shoulders, hear the cannons.  So Andrew, Michael, and I drove, in our nice air conditioned car, down to Orem where this was all set up.  It probably wasn't as exciting as they wanted it to be, but it's sparked a renewed interest in our great nation's history.  (At this moment, they're watching American Ride on KBYU-TV.)

After that, we walked the "Path to Citizenship" where we learned more about the Declaration of Independence, the Constitution, and the Bill of Rights.  The day before, we were told, 15 people from 14 different countries took the Oath of Citizenship and became citizens of the United States, right there on the stage.

Then we watched a musical presentation about people through the ages who had sacrificed for freedom.  From Joan of Arc to the separatists to the colonists and on.  Prior to that show, there was a silent drill team show from the BYU ROTC.  So wonderful to watch these amazing young men, cadets who will be commissioned into military service at the end of their college years.  During the "Star Spangled Banner," everyone stood.  Then during "God Bless America," I watched as an older gentleman, a veteran, stood as well, almost all by himself.  In speaking to him, he was a veteran of both Korea and Vietnam.  We owe so much to these men and women, and their families.

Growing up as an Air Force brat, I think it was just part of my blood.  I was raised to respect and love our flag, what it stood for, the sacrifices it signifies. A beautiful symbol of a wonderful nation.

That evening, we took Aaron to fireworks, his second time.  He loved them!  Lying on the blanket, he bounced and giggled through the show.  And I'm so glad he was there, got to experience that with us.  And so very grateful that it's a symbol of those bombs bursting in air, and not a reality.

And I'm proud to be an American,
where at least I know I'm free.
And I won't forget the men who died,
who gave that right to me.
~Lee Greenwood

Wednesday, July 2, 2014

Living the Good Life, BECAUSE of the Challenges

It struck me the other day how much I've changed on this journey of ours.

I'm a bookworm.  For years, I would read just about everything I could get my hands on. And if it was well written, if I could get lost in the story, so much the better, at least from my perspective. My family may have thought otherwise.  Seriously, the house could probably burn down and as long as I didn't get overheated, I wouldn't even notice.

But a couple weeks ago I started a new book, and simply couldn't go on.  It was the (fictional) story of a little boy with cancer who had relapsed, told from the father's perspective.  It was well written, too well written.  After they checked into the special hospital and were back at the car getting their bags out, I realized that I just couldn't read it.  It was too close to home, too raw, too painful.  Too much like my own life.  And I simply had to put it away. (After reading the last page to find out if he lived, you know, I just had to know.)

And I realized that this hasn't been the only time I've put down a book, or not even picked it up, when I would have devoured it before.  Before Aaron, I would have read it, enjoyed it, probably shed some tears, and it would have been a cathartic experience.  Not anymore.  Now it makes PTSD rear it's ugly head.  I get enough of that guy from my own experiences.  No need to invite it along just for fun.

It's funny how things play out.  In January of 2010 (I'm pregnant with Aaron but don't know anything's going on), I read The Book Thief.  Loved it!  It was time to choose new books to read in our book club.  I highly recommended it and was assigned to review it in our July meeting.  No problem!  Baby was due the end of June/beginning of July.  I would have plenty of time for rest.  Babies sleep a lot then anyway.  I was really looking forward to this.  It's narrated by Death and I found the perspective fascinating.

Um, in February I had my ultrasound.  Yeah, that one.  The one where they tell you Death is coming for your child, your not-yet-born child.  In March, we read Still Alice, another fascinating book, but there was the whole "death" discussion as it's about a woman diagnosed with early onset Alzheimers.  I realized that there was simply no way I could lead the discussion about The Book Thief.  I told the one group member who knew what was happening, and she volunteered to take care of it for me when the time came.  And I skipped that meeting.

Now, I find myself reading fantasy, historical fiction, even the occasional medical fiction, as long as it doesn't deal with children.  I also read medical journal articles, and medical blogs.  Not just the ones written by other "consumers" like me, but also ones by doctors, paramedics and those living on the other side of the table.  Some I read for entertainment, some I read because I need the information.

So anyway, where's this going?  I've changed, and this is just one example of how.  And while it's strange sometimes to realize how much, it's not been a bad thing.  Not at all.  Because I actually like the new me, probably a whole lot more than the old one.  Sometimes (often?) it's harder, but I think hard things can be good.  They require muscles, a different set of muscles, to see you through.  I rely more on God than I used to.  I'm more open to different points of view, new ideas, new horizons.  My eyes have been opened to some of the uglier things in life, but also to the more beautiful, more powerful, more soul-stretching.  And that's a very good thing.

At church on Sunday, a man asked me if I was "living the good life."  In a flash, my mind went to all the challenges:  the uncertainty of Aaron's health, the significant financial issues, missing three of my kids who are gone, keeping the ones here from killing each other, you know.  You've had those thoughts, too.  I think we all have.  But then, in the next second, I glanced down at Aaron, saw another son coming out the door, and smiled.  "Yeah, I think I really am."  'Cause I am living the good life.  It's a very good life.  No, our problems aren't all going to go poof in the wind.  We still have to work through them.  But I'm surrounded by love, by life, and it is good.  It really is. In fact, it's much better than before.  And I'll take that.

In the depth of winter I finally learned that there was in me 
an invincible summer. -Albert Camus