Something this big deserves a post

After 3 years without a single blog post (because, let's face it, hardly anyone was reading it, and my internet was soooo slow), I'm back.
We've had some major changes in our life lately--one in particular, and everyone's asking, so this just made sense.
But first, here's the abridged version of our life since 2010 (if you know it, scroll down, and if you're in a hurry, skip to the bold parts):

2010: I became the PTO president and babysat 2 fun kids part-time.  Spent too much time doing PTO and not enough time being an awesome mom and babysitter.  Jonathan had some great events at Kershaw, and everyone loved him.

2011: I started substitute teaching.  Jonathan had more great events at Kershaw (century bike ride, anyone?) and everyone loved him.

2012: Jonathan applied for a park supervisor job (promotion) at Big Bend State Recreation Area in Laughlin, NV.  (Also, some difficulties passing the required fitness test led to his being diagnosed with exercise-induced asthma.  Inhaler.  Check.)

He got the job, so we moved to Laughlin in April, and, for the first time in my life, I experienced 100+ degree weather in April.  It's hot here.

Our park house was full of termites, so they moved us out and tore it down.  We're in a condo, waiting for a new house.

In the fall I started substitute teaching again.

2013: Because the Big Bend job requires him to have law enforcement training, Jonathan was sent to Carson City in January to spend 4 months at POST.  I cried when he left, because Carson is 10 hours away, but we saw him now and again, and it got easier with time.  Jonathan learned a lot, made new friends, and developed quite a physique, but he was really struggling with the endurance runs and even failed the mid-term run.  He was doing extra runs and bike rides on his own to improve his endurance.

Early-April: I was diagnosed--probably--with rheumatoid arthritis.  Still waiting on final diagnosis after I get some x-rays done.

Mid-April:  Jonathan's first cousin was diagnosed with a genetic heart condition called hypertrophic cardiomyopathy (HCM) and needs open-heart surgery as soon as possible.  Jonathan's mom (Sharon) has it, too.  She had open heart surgery a year ago, and she seems fine now.  We knew it was genetic but didn't think too much about it (nobody in our family was randomly passing out, which was her main symptom).  But when Sharon called to reemphasize that everyone needs to be tested, I got online to read about it.  The list of symptoms matched Jonathan's "asthma" almost exactly.  Number one misdiagnosis: exercise-induced asthma. 
For people with HCM, especially if they show symptoms, exercise is extremely dangerous and can lead to "sudden death."  As I understand it, this is the most common cause of heart-related deaths in young athletes.

So that night--it was a Monday--I texted the symptom links to Jonathan to read, and then called him and confronted him (expecting my typically-stubborn husband to disregard it), saying that he couldn't deny that he had this.  He quietly said, "I know."  I told him he needed to get to a cardiologist right away, but he insisted on waiting until he graduated from POST--in 3 weeks!!!  Meanwhile, he would have more runs and fitness tests and chances to literally drop.  I started to cry as I argued with him, but he was determined to wait and graduate, because he knew if he was diagnosed with HCM, they would send him home.  He finally promised me that he would do more reading and decide what to do.

Tuesday morning he called me and said that I was right and that he needed to go to the doctor.  The first step of treatment (in mild cases) is medicine, and he was hoping to receive a prescription that would help his symptoms and improve his chances of passing the final fitness run.  He asked me to get him into a cardiologist that Friday, because it was his only day off.  Riiiight.

Friday: Miraculously, I was able to get him into the first cardiologist I called.  Jonathan spent all of Friday in medical offices.  Dr. O'Leary sent him to the hospital for an echocardiogram (basically an ultrasound of the heart) and told him that when he returned, she would watch the echo and have him do a treadmill stress test.  He called me from the cardi's lobby after his echo: "I haven't seen the doctor yet, but I think it's bad news."  Why?  "Because they're not having me do a stress test."

Long story short: Jonathan has hypertrophic OBSTRUCTIVE cardiomyopathy (like his mom) and was banned immediately from any cardio exercises or anything that might overwork his heart. He was told to choose a hospital and surgeon--not just anywhere--and have open-heart surgery ("septal myectomy") as soon as possible.

 

Read more about HCM here.

 (Pause:  We do NOT blame our doctors, who are also our good friends, for not correctly diagnosing Jonathan.  It is only natural to think of asthma rather than a life-threatening heart disease, especially without knowing the family history; that's why it's so commonly misdiagnosed.)

Sunday: Jonathan visited his POST supervisor and informed him of the situation.

Monday: Jonathan was informed that a panel had decided he needed to go home, with only 3 weeks left before graduation.  He has 12 months to have surgery, get back in shape (hopefully--people usually can), take the last few weeks of POST, and pass the fitness tests.  His employers are being extremely supportive and have instructed him to not give a second thought to the possibility of losing his job.

Tuesday: The glorious reunion I had anticipated wasn't quite as happy as it should have been.  Jonathan got home late in the evening, and the kids, who didn't know he was coming, were thrilled to see him.  I was happy to see him, but--well, you get it.  Hard to be excited in that situation.  (Did I mention that I had lined up a babysitter for 4 days and booked a flight to Carson for graduation, as well as a 2-night stay in Lake Tahoe for our anniversary get-away right after the ceremony?)

Catching you up to the present: Jonathan's mom had her surgery at Duke University Medical Center in Durham, NC (if you know Jonathan, you can hear his groan--go Tar Heels!).  She suggested that he should go there, as well, and then we could spend his recovery time of 2-3 months with them in Wilmington.  After weighing our options (Stanford, U of U, Mayo Clinic....) we decided that this was the best course of action.  Jonathan gets treated by his mom's doctor, Sharon can help take care of Jonathan, and we get to spend the summer with our family and friends in North Carolina.
All of the necessary information has been sent from Carson Cardiology to Duke, and now we're waiting to hear from the doctors there.  They will review the information and call us, hopefully within the next few days.  Whenever they want the surgery done, whether the kids are finished with school or not (it's doubtful), we will withdraw the kids from school and fly to NC.  And yes, even though it's under some rough conditions, we're excited about the opportunity to spend that much time out there.  We miss our southern people!

Today?  Jonathan is at work, here in Laughlin, trying to get something done but feeling like he can't do much at all.  I'm trying to live life as usual, praying that a phone call comes sooner rather than later.

And the kids are all scheduled to see a pediatric cardiologist in Las Vegas in 2 weeks.  Because it's genetic, they all need to be tested.  It can be diagnosed through an echocardiogram, but even if the problem hasn't developed yet, their genes can be tested to see if they are carriers.  I will have some very sad kids if they are told they can't participate in youth sports.

(OK, my hands and wrists hurt as I type this.  And I'm going to complain to you, because I can't complain about my arthritis to the guy who has heart disease.)

Now, for me.  I'm thinking of teaching next year to pay all the medical bills.  Yes, Jonathan has good insurance with the state, but even under the best conditions, we're going to owe thousands of dollars out-of-pocket, which we just don't have.  So we can go into debt, or I can go to work for a year or two, pay the bills, and save up some spare change.  (Bailey can serve a mission in 8 YEARS!)  Throughout our marriage I have been adamant about staying home whenever possible, but there have been a few times that I've worked, as needed.  I have an opportunity to teach at the elementary school here, and we are prayerfully considering what's right for our family.  Brycen still has one year left at home, but he goes to a wonderful day care when I substitute, and he may also be eligible for half-day preschool in the fall.

Last of all I want to say that we have no doubt that Heavenly Father is watching over us and guiding us through this entire situation.  We can see how the timing of everything has come together in a way that is no coincidence, and that we are being guided and protected by the loving hands of our Father in Heaven and His Son, Jesus Christ.  We aren't wondering why this is happening to us or what we have done wrong to be in this situation.  Trials and pain and suffering are part of life, and we have already experienced the blessings of growing and stretching and becoming stronger, as individuals and as a family, as we have faced these challenges and turned to Them for peace, strength, and courage.  We are so grateful for Their loving protection.  We are God's children.  He loves us.  And we love Him.