A Broken Heart

Incidence:
35,000 children are born with heart defects every year (American Heart Association)
Only 1% of those children have truncus arteriosus (many sources, including the Herma Heart Center where Turnip may be treated)
That means about 350 babies are born in the U.S. with the same condition as Turnip every year. (330 according to the Morbidity and Mortality Weekly Report from jan 6, 2006)
Treatment:
Surgery usually happens at 6-12 weeks (EPA, page 4)
15-50% of children require another surgery within the next five years (i.b.i.d.)
All heart valves are replaced after 12 years(i.b.i.d.)
Newborns with truncus arteriosus stayed in the hospital for an average of 30 days during 2003 (CDC, table 2)
The hospital charges for this stay (not including lab tests and doctor fees) ran to $200,000 (CDC, table 2)
Mortality:
In a small study published in 1996, 6% of infants died before surgery and 10% died during surgery (EPA, page 4)
In a national survey, 20% of newborns with truncus arteriosus died in the hospital in 2003 (CDC, table 1)

Tuesday, October 27, 2015

quarterly cardiology appointment

Small boy's appointment yesterday was boring, which means we will be planning birthday parties for December instead of surgery.

His echocardiogram showed no changes from April-except a slight normalization in the shape of his heart.  The pressures in his heart are still moderately to severely elevated.

For now, he will visit his cardiologist every four months and have an MRI once a year...until something changes.

Tuesday, September 22, 2015

anticipation

After small boy's troubling echo in April, his stress test in May and his MRI on June 1st, we didn't hear anything for a while.

Eventually, in July, I called to make sure he was o.k. to fly to visit family.

In August, I called again to ask what the treatment plan was--and learned that instead of surgery, small boy will just be having more frequent follow up visits with his cardiologist.

I still haven't seen a report on the MRI findings, but I figure they must have been reassuring since we are not scheduled to return to the cardiologist until late October.

In the meantime, he is enjoying first grade and his teacher is trying to find ways to help him productively channel all of his energy.

Once again, there will be no long range plans being made by this family--nothing beyond October 26.


Monday, June 1, 2015

How we roll: MRI plans

Prep:

breakfast low in protein finished by 7 am: Poptarts

clear liquids finished by 11 am: Sprecher's root beer

bag packed: pull up, blankie, Sarah (stuffed penquin), Captain America sweatshirt, ipod touch

MRI-friendly clothes on: no metal zippers, snaps, buttons, etc...

At the hospital:

Checkin: 1:45

Procedure: 3:15-4:45

Recovery: 1-2 hours

Home: 7 or 8 pm

Tuesday, May 26, 2015

Uncertainty

Called insurance and cardiologist today to ask about getting second opinions.

I wanted to know:

1) Who I should go to for the opinion: a cardiologist or a cardiothoracic surgeon.
2) Where I should go to get a second opinion not only about the course of small boy's treatment but also about the reputations/successes of the two potential surgical programs in our home state.
3) What our insurance would cover.

Small boy's cardiologist called back this evening.  It seems as though the treatment plan and timeline are both in flux.  While the initial recommendation, based on small boy's echo findings, was for surgery this summer, the stress test has complicated matters.  Now small boy's cardiologist and the surgeon with whom he works most closely think it MIGHT be best to revert to the waiting game.   It all really depends on what small boy's pending MRI shows.  If it shows that his heart is enlarged, but the walls of his heart are still a normal thickness and the blood seems to be flowing through adequately, then small boy will start getting echos every three months.  It turns out that kids tend to tolerate having an enlarged heart pretty well.  However, if the walls of his heart appear to be thinning or the blood flow looks troubling, then we'll jump on board the surgery wagon!  

The cardiologist recommended consulting with a cardiologist and suggested the Mayo clinic and Michigan as good places to consult.  

I'm waiting to hear back from the insurance company.  

Friday, May 15, 2015

A day like this

Goodbye, John Poppy

Tuesday, May 12, 2015

MRI date: June 1

...which really puts a cramp on our summer plans if small boy is going to have surgery this summer...

I had hoped he would have his surgery on the 1st or 8th of June, so that he could have six weeks of recovery before the end of July, when the second session of T-ball and soccer and tennis and swim lessons start.

We could pre-emptively schedule a surgery date for the 8th of June.  But I also want to get a second opinion before moving forward and that might not be so realistic.

Alternatively, we could schedule surgery at the end of July...But then we run into two problems: July is when all of the new residents and fellows start at the hospital (I'd rather have more experienced staff on small boy's case if we can) and he would only be four or five weeks post-op by the time school started in September.  I'm not comfortable sending him back to school with blood thinners on board before he is fully recovered.  He is six and likes to run and jump and bash into his friends.  I don't think the school has the resources to ensure that he doesn't do that...at all.

I've scheduled his pre-op appointment for May 20 and plan to call radiology every day after that to see if they have any openings in their schedule so we can get things rolling a bit quicker.

Friday, May 8, 2015

cardiac stress test

Because small boy behaves completely normally and does not act as if he is in heart failure,  his cardiologist and the local cardiothoracic surgeon decided to have him do a stress test before taking fancier pictures of his heart in preparation for surgery.  The purpose of the stress test was to see how hard his heart has to work when he runs around and how fast his heart wears out once he starts running around.

If small boy's heart looked like it was working really hard even when he was doing light activity (walking slowly), or if he showed signs of stress as he was asked to become more and more active (running up a progressively steeper hill), it would mean that his funky valve needs attention now.  In that case, we would skip the MRI (which requires general anesthesia) and just have him do a CT scan (which does not require general anesthesia).  The CT scan would allow the surgeon to take adequate measurements to prepare for the surgery.

If however, small boy's heart looked like it was able to handle strenuous activity, then the physicians would want to do a more detailed MRI (with general anesthesia) to get a better picture of his heart... and determine if maybe we would want to change the timeline for surgery.

If you haven't met small boy, he runs.  He runs to the bus stop in the morning.  He runs to the park in the afternoon.  He runs with his 10-year-old sister and our 10- and 12-year-old neighbors.  He runs on the three-to-five mile family hikes we take every Sunday.

Small boy was very excited the day of the stress test.  He got to go on a field trip with his kindergarten class in the morning and then in the afternoon he got to show his cardiologist how fast he can run.   He talked about it for days before hand.  He planned which clothes and shoes to wear...and then, he ran...on a treadill...with a 10-lead-EKG....for the very first time.

He did a standardized stress test.  Most kids his age last through the first stage or two (Each stage lasts three minutes).  Only 10% of kids his age last more than ten-and-a-half minutes.  Small boy went twelve.

His cardiologist says small boy is giving him gray hair.

We should be getting a call to schedule the MRI soon.

Wednesday, May 6, 2015

nasal cautery

In preparation for blood thinners, we got a peek up small boy's nose and a little way down his throat.  There was only one patch that was cauterized.  The rest looked good.

Saturday, April 25, 2015

choosing...

When Oliver was very young, his dad and I were scared: scared that he would never leave the hospital, scared that he would die young, scared that he would be scarred in more ways than just the physical.

At that time, we made what I thougth was a difficult decision: to live our lives AS IF he were going to live.  That meant discipline, and expectations, and going on with our lives to the extent possible.  It also meant normalizing his condition and treatment becasue he'd be living with them for a long time.  We have always been open about what happened and what will happen again in the future.  We have never referred to him as a poor boy or expressed pity about his condition--about immediate pain and suffering, yes, but about his condition, no.  Oliver has a photo album from each of his hospital stays that show everything that went on...and he looks at them on a regular basis.   He knows that he will need more surgery in the future.

Over time, our decision became fairly automatic.

During the run up to Oliver's last surgery a year ago, I realize how successful we had been when Oliver asked his dad when he had gotten his big-boy heart parts.  Oliver did not realize that not all boys got surgery to upgrade their hearts.

A few months ago, though, we had a conversation that let me know that we still have a long way to go.  We were talking about sports and his limitations (which we decided to put in place early, so we won't have to redirect him from a sport he loves once he gets his mechanical parts):  no football, no hockey, no competitive weight lifting...basically nothing with repeated hits to the body or lots of straining.  And Oliver looked up at me and said, "But when I get all better I'll be able to do that."

In that moment the choice to behave as if he were going to live became, once again, hard.  It ached to tell my son, "You have a terrific cardiologist and surgeon and they help your heart work the best they can.  Your body is as good as its going to get.  You will always need to be careful."  It ached to hide my sorrow at his hope.  It ached to not tell him how sorry I was and instead treat this aspect of his life as part and parcel of the wonder of living.

This past week, the choice to live every day as if he is going to live has become more consistently difficult.  I have to remind myself over and over again every day.  I just want to smother him with kisses and feed him his favorite foods and let him play Wii all day long if that is what he wants to do.  It is so hard to push aside my fears of losing him, and help him learn how to live a rich, fulfilling life full of joy and service.  And so, when the urge strikes to excuse his poor behavior, or coddle him, or give in to his unreasonable request to eat only meat and rice at dinner, I fight it...and choose to teach him those skills and behaviors that will serve him later in life...in the hope that, one day, those lessons will be needed.

(At some point, my current strategy may no longer be appropriate, but for now, I chose to "live life till we're dead."*)

*Gym Class Heroes "The Fighter"

Friday, April 24, 2015

another day, another dollar

If last week was all about cleaning up the loose ends from last summer, this week has been all about ramping up for the unexpected adventures of this summer.

Small boy's most recent cardiology appointment on Monday was....exciting.

It appears that his home-grown aortic valve has reached the end of its useful life.
The echocardiogram showed lots of leak across this valve with accompanying changes in the shape of his heart.  (That translates to a steep gradient, lots of regugitation and left ventricular hypertrophy).  His heart is now shaped more like a basketball (bad) than an American football (good).

It looks like Oliver will be getting his mechanical valve this summer, with an accompanying lifetime prescription for blood thinners (coumadin).

There are still a few more tests to be run, but everytime I talk with the cardiologist, I learn additional disheartening facts.

On Monday, we got a preliminary reading of the echo, and the cardiologist indicated that small boy might need surgery and might get either a tissue valve or a mechanical valve.  He indicated that we would need a fully-sedated MRI to confirm the echo findings and prepare for surgery.

Last night (Thursday), he called back to let us know that small boy willl be doing a stress test prior to any further imaging studies.  If small boy does poorly on the stress test, it will confirm that his heart is failing and we will do a quick and dirty CT without general anesthesia to get some additional information to use during the surgery.  If small boy does well on the stress test, we will need to do an MRI with general anesthesia to both confirm the results of the echo and need for surgery and get some measurements to use during the surgery.

The cardiologist also indicated that the shiny, new part small boy had put in last summer is no longer so new and shiny.  There is a gradient of 30 across the pulmonic valve.  However, the replacement part still looks physically good, it is just not working as well as it was when it was put in.  This may be because the heart is working harder to compensate for his failing aoritic valve and putting additional strain on this part.

To sum up: small boy's aortic (truncal) valve is failing, his pulmonic (homograft) valve is having trouble, his heart is signficantly enlarged, and he will be getting his first mecahnical valve and going on blood thinners this summer.


Thursday, April 23, 2015

the good fight

On Wednesday of last week, I got a call from a collections agency.  Apparently, despite assurances back in February that a settlement was in the works, our insurance company has still not adequately paid the hospital for last summer's surgical adventures.

Wednesday, I called the insurance company, the hospital, the collections agency and a middleman who had been working on our case.  I called each of them probably three times on Wednesday, and then again three times on Thursday.  By the end of the day on Thursday, the hosiptal assured me that they would take the bill back from the collection agency.

Friday, I called the collection agency to confirm that the bill had indeed been taken back and learned that while the $18,000 bill had been taken back, there was a new $140 claim that had shown up.  Dozens of calls later, I was assured that the bill would be paid by Tuesday.

Yesterday, I called our insurance company who confirmed that the $140 claim had been paid, but indicated that there were still complications with the larger bill.

Blergh...