Monthly Archives: June 2010

So Far, So Good

I am very exhausted and really want to track down my kids from the hallways, plop them in front of a movie, and take a nap.  But, before I do that, I thought I’d stop in here and update you all.

We’ve been home from Boston for almost a week, and so far, so good.  The defibrillator has not struck again. Actually, a device-check on Monday indicated my husband hasn’t had any runs of vtach since we were in the hospital in Boston.  That is great news.  The ablation helped; the antiarrhythmia meds are working; it’s all good for now.

Like most major league baseball players, my husband is now on steroids.

Ok, Ok.  Not that kind of steroids.  He reminds they’re not that kind of steroids every time I ask him when he’s going to start looking like Ahhnold.  Or when I start acting all Frick and Frack and saying something about being here to pump you up.

He’s on a big ole’ dose of Prednisone.  Which means he’s also on an antibiotic (because the steroid suppresses his immune system) and Prilosec (to prevent an ulcer).  We bought a treadmill because he needs to walk every day to keep his bones strong (because Prednisone can weaken bones) and to keep from gaining weight on the steroid.  And he’s started the process with our insurance company to get a continuous glucose monitoring system to help with good control of his diabetes (because Prednisone can really mess up the body’s reaction to insulin).

Basically, he’s walking a tightrope of advantages of Prednisone for the treatment of sarcoidosis without falling into the horrible side effects of big, long-term doses of steroids.

As for me, I have a long to-do list here at home — closets that need cleaned, toys and clothes that need sorted and organized, bookshelves that need purged, a treadmill that needs to find a home that is not the middle of my living room.  I’m also hoping our leaking refrigerator is as easy to fix as we think it will be.  And I’m hoping that when I try my washing machine, it has miraculously fixed itself after a couple weeks’ rest.  That’s just the kind of summer I’m having, folks.

But when I’m tempted to complain, I just remind myself to put it all in perspective.  My husband is alive.  In all likelihood, my children don’t have to worry about a horrible heart condition.  I have great friends and family who pulled together to help us out in the past month.  Really, I have so much for which to be thankful.  I’m a fortunate girl.

Things might be a little bit crazy in the day-to-day management of my home, but in the ways that matter — so far, so good.  Very good.


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Home Is Where The Heart Is

Well, sort of.  I guess we could say my husband’s heart is divided — a little bit of it is in Boston, but the rest of it is back in Florida.

Sorry. Bad heart biopsy joke.

Seriously, though, we’re home.  As my father-in-law stopped at the airport curb to pick us up, our kids rolled out of that van like clowns in a circus car.  They hugged us and hugged us and hugged us.  Then, when I was trying to hug one I hadn’t hugged yet, one son jumped on me and wrapped himself around me like a spider monkey.  While I hugged, he hung on for dear life.  It was a beautiful moment.

If we counted hugs and kisses like we count money, I would be a bagillionaire right about now.  And that would only be counting the hugs and kisses from today.

In between hugs and kisses, I tried to spend a little snippet of time talking to each kid today, getting a pulse on where they are emotionally.  We’d been gone for a week and a half, and my husband was in a hospital of some sort (FL and Boston) for more than three weeks.

These kids finished out the school year, collected awards, put on a program, celebrated our oldest’s 12th birthday, enjoyed more than two weeks of summer vacation, and one daughter has spent hours and hours in rehearsals for a community theater play — all while wondering if their daddy would live, if their daddy would be in the hospital all summer, if we’d make it back for the play, if they’d get to go to the beach at all this summer, if we’d still get to travel to WV and VA this summer to see friends and family, and if they would have to spend weeks and weeks in a hospital some day too (because they all know they saw a cardiologist last year and had all sorts of heart tests).

So right away, I wanted to get a grasp on where each of them are emotionally.  I have a feeling I’ll be having these conversations often in the months to come — just checking in with each one, asking questions, listening, showing empathy and understanding.

Silas, my seven-year-old, was my biggest concern.  Before we left for Boston, he was angry and he wanted us all to know it.  He could easily articulate why he was angry too.  He was mad that his daddy was sick, mad that his daddy had spent so much time in a hospital and was having to go to a different hospital far away, and he was mad that his daddy might die and we couldn’t promise he wouldn’t.  I think the kid had some pretty good reasons to be mad.

While we were gone, he seemed to move from angry to really, really sad.  He told me on the phone that he was not mad any more; he was just really sad that we were still away, really sad that Daddy was still sick.

Tonight, he was just happy — happy that Daddy seems well, happy that Daddy isn’t going back to the hospital, happy that we’re together as a family again.  And so we talked some more — about fun things he did while we were away, about who we saw and what we did in Boston.

Then I said, “Do you have any more questions about Daddy, about Daddy’s health, about Boston?  You can ask me anything.”

He paused, contemplating.  Then he said, “Yeah, there is something I was wondering.  Is Boston spelled with an ‘i-n’or with an ‘o-n’?”

Yeah, a piece of my heart isn’t in Boston with an o-n.  A piece of my heart is with that seven-year-old boy.  It’s good to be home with him.


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Letter – June 16

below is the letter I wrote to friends & family this morning — wanted to let you all in blog-land know the good news!

Hello, friends and family.

I have good news!

First, Patrick has been released from the hospital, and we will fly
back to Florida tomorrow. It will be so good to hug our children and
be together as a family. I am looking forward to boring, normal days
hanging out at home, loving on them.

Even better, the biopsy results (along with all the other evidence)
suggest Patrick does have cardiac sarcoidosis. If we had to choose
between ARVD or sarcoidosis, we would for sure choose sarcoidosis!

Any tissue that has been damaged cannot be recovered; however, we do
hope the progression of the heart damage can be stopped and we hope
that the inflammation will disappear and any arrhythmias being caused
by that will also disappear. A sarcoidosis diagnosis gives us hope!

Though sarcoidosis may have a tendency to run in families, it
certainly doesn’t have the same genetic implications ARVD has. So
this is MUCH better news for our children.

So Patrick starts right away on a pretty high dose of an oral steroid
medication. He will take the highest dose for three months, then we
will come back to Boston for another PET scan to see if the
inflammation is responding to the steroids. If they are working, he
will take the steroids for about a year.

In the meantime, the doctors are still testing that biopsy tissue for
any other problems and to definitively rule out ARVD. They have also
sent off Patrick’s blood sample for a genetic screening for ARVD. It
would be very, very rare for him to have both sarcoidosis and ARVD
(like winning the lottery twice, according to Dr. Tedrow), but -for
the kids’ sake, we need to be as sure as we can be.

We still have a long road to recovery ahead, but there is hope that
Patrick’ s heart will not be severely damaged, hope that he won’t need
a transplant, hope that he will be well, and hope that our children
won’t face these same health problems.

All of this talk of hope reminds us of the hope we have in Christ —
the hope that has sustained us for the past month, the hope that even
if Patrick hadn’t lived through this, we would have an eternity
together with Jesus.

There is so much more we want to tell you of how the Lord has been
working for good and the people we have met, but we’ll have to do
that in installments so we don’t overwhelm you. :).

For now, I’ll leave you with the words of another J J Heller song that
has comforted me in the past few weeks —–

“You love everyone that I love
More than I ever could
Though my days are filled with trouble
Lord, I know you’re good . . .
Because You will never let me go
And I will never cry alone
And You will always be my home
And you tell me so”

Thank you all for your prayers and encouragement.



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I am sitting in a hospital room in Boston. We came here 8 days ago.

I have slept in a Holiday Inn, on the couch-bed in a hospital room, and in a quaint little inn.

I have used almost all of a tube of travel-sized toothpaste.

We are on a first-name basis with the residents and an attending or two. The cleaning staff stops to chat with me in the hall.

We have claimed the corner of a shelf in the fridge.

The shift manager of the coffee shop downstairs recognizes me now.

I have been away from home too long.

A couple days ago I asked my 9-year-old if he would please stop eating so he wouldn’t grow any more while we’re away. He laughed and told me, “No way!”

The cardiovascular center at Brigham and Women’s Hospital in Boston is the best in the world – or so I am told. I am comforted by that thought.

The electrophysiologists here did an ablation procedure on my husband’s right ventricle last Tuesday. They assure us it went well. They found on major source of arrhythmia, and they ablated that. He does still have several other areas misfiring crazy little beats here and there (PVCs or premature ventricular contractions). There was no way to ablate all of those now. We will just have to wait and see if they get worse and cause vtach (ventricular tachycardia). Then they could be ablated.

We came to Boston because the doctors in FL do not do this procedure.

After the ablation, the electrophysiologists and heart failure specialists told us that my husband’s initial diagnosis may be wrong. This could be good news! I can explain more of that later, but -for now- I’ll say that I feel like I have been living in an episode of House for the past week.

Right now, my husband is having a heart biopsy. The doctors can then examine this tiny bit of his heart and -we hope- learn exactly what is causing the arrhythmias and heart function decline.

In the meantime, I wait — and chat with the cleaning staff and the coffee shop manager.

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Heaven Stands

As I was driving home from the hospital today, I was listening to JJ Heller.  Her song “Your Hands” came on.  So then I was driving down I-4 playing and replaying and replaying this song, singing along with tears streaming down my face.

When my world is shaking

Heaven stands

When my heart is breaking

I never leave Your hands

What a good reminder!  In the past 10 days, my world has been shaking a bit.

My husband continues to have arrythmias, though the new medicine seems to be helping a bit, and now his liver enzymes are elevated and his blood pressure is often lower than we’d like it to be.  We are spending a lot of time waiting to see what the medicine does and monitoring his heart and checking his liver enzyme count every day and trying to keep his blood sugar levels within normal range.

At home, I’m giving hugs and trying to consistently discipline little boys who are pushing the limits to see if the boundaries are the same while Daddy’s in the hospital.  I’m answering questions like, “When will Daddy come home?” and “Do you think Daddy is going to die?” and “What will happen to all of us if he does die?”

Our world is shaking – some moments are little tremors and some moments, like when my husband was being shocked by his defibrillator, feel like giant earthquakes.  But Heaven stands.  Always.

And there have been times in the past 10 days when my heart has been breaking.  Last Tuesday when my husband was having dangerous arrhythmias and I hugged him goodbye so I could rush back for the kids’ end of school program, I thought I might be telling him goodbye for the last time.  My heart was breaking.  When I had to leave my 10 year old daughter sobbing in fear while I rushed my husband to the ER, my heart was breaking.  When my 7 year old asks me, with a voice full of fear, if his daddy will die, my heart breaks.  But I never leave my Father’s hands.  Never.

Those are comforting thoughts for me.

When my world is shaking

Heaven stands

When my heart is breaking

I never leave Your hands


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