Wednesday, November 29, 2017

Wolff-Parkinson-White

 


This is my boy.  My Blake.  He is 16 years old, an athlete, a student, an employee, a friend and 4 weeks ago he passed out at school.  This was not an isolated incident so I made an appointment with his doctor. 

We went into the appointment with the idea that maybe it was diet related or an iron deficiency, something we just wanted to pinpoint and rectify.  His pediatrician ruled out our ideas and basically chalked it up to a normal side effect of rapid growth.  He suggested an EKG to rule out any unforeseen things but highly doubted there would be anything.

Leaving the pediatrician we drove directly to the hospital to get the EKG done.  It was a Friday.

Monday afternoon I got a voicemail.  "This is Dr. X and I wanted to let you know we did see a delta wave on Blake's EKG and I've been in touch with Seattle Children's Hospital and they want to see him."

Crushing weight.  Confusion.  I listened to the voicemail probably 4 times.  Trying to let it sink in.  I googled the terms he used so I would know better what we were looking at.  Then I told Blake.  He was in disbelief but, as most teenage boys, he stuffed the information deep within and went about as normal.

It wasn't really normal.  He admitted that.  Later.  He was worried.  He felt different.  He felt every beat of his heart.

Four days later we were in Children's Hospital.  He underwent another EKG that showed the same delta wave.  He had an echocardiogram to take images of his heart.  We met with a cardiologist and were given the name Wolff-Parkinson-White Syndrome.  This is a congenital heart condition that Blake has unknowingly lived with for all of his 16 years.

WPW is an extra electrical pathway within the heart that can cause irregularly fast heartbeat and could cause cardiac arrest.

We received this information on a Friday.  Wrestling was to start on the following Monday.  Blake is a returning State placer, heading into his Junior year as team captain.  This kid eats, sleeps, and lives to wrestle and he's been looking forward to the season since about one week after the last season ended.  Faced with the prognosis we had, the cardiologist recommended that he not wrestle until we had some more tests done.  This was not an option for Blake.  For reals.  He told the doctor that he was going to continue to wrestle.  And we sat in that little room and supported our son.  And that was one of the hardest decisions a parent can make.

This was not a haphazard decision.  We had been given all the facts.  We weighed all the information we had with the fact that Blake has been wrestling since he was 8, with WPW all along.  And we weren't even sure that his fainting episode at school had been caused by WPW.  We accepted the risks.

The following week on a Thursday (one week before Thanksgiving) we were back in Children's Hospital for more testing.  They wanted to see how the electrical pathway in Blake's heart would behave during exercise.  They attached monitors all over his chest, monitored his blood pressure, and had him jog on a treadmill under constant supervision.  The goal was to see the electrical pathway weaken and stop at a higher heart rate.  This would be a low risk pathway. 

The pathway didn't stop.  It continued to send electrical pulses.  At this point the cardiologist could not say whether Blake was high risk or low risk until further testing was done.

We stopped at Red Robin on the way home that night.  We ate burgers, bottomless fries, and shared a gigantic dessert.  We had good conversations, we had honesty.  We shared fears and optimism.  Basically, we put one foot in front of the other and carried on carrying on.

Monday morning, Thanksgiving week, we checked in at Children's Hospital.  Blake was admitted into the cath lab for preparations.  He changed into a hospital gown, grippy socks and waited.  Cath nurses came and talked to us.  Anesthesiologists came in and went over risks and worst case scenarios.  The cardiologist came in and went over what they were about to do.  Then my boy walked out of the prep room one way with the staff and we were sent out the other way with all of the risks and worst case scenarios heavy in the air.

I broke down.  Not even going to lie.  Heavy tears fell.  I was scared for my kid.  He didn't ask for any of this.  He should be focusing on being a teenager, being the best student he can, being the best athlete he can, being the best employee he can.  Not here, in this hospital facing the unknown.

We walked to the cafeteria and got some coffee to pass the time.  As we sat there a family came in.  Dad, Mom, son.  He was maybe 10 or 11.  His skin had an unhealthy pallor.  His head almost bald.  I watched as his parents tried to smile through weary eyes.  His dad held up a cup of water with a straw to his son who took a mouthful and swallowed with visible pain.  It broke me and I could only watch with tears in my eyes.  This same story plays out in this place day after day to family after family sometimes with happy endings and sometimes with sad.

Meanwhile my Blake was anesthetized and intubated.  He said later that this process was terrifying.  The bed he was on was too narrow  The room was too cold.  The nurses joked with him.  His body went numb.  The nurses began to talk to each other with medical terms he didn't understand.  His mind remained.  He held up a hand and snapped his fingers.  And that was the last he could remember.

They placed a catheter in his neck and down to his heart.  They sent his heart into an arrhythmia to determine if the electrical pathway would weaken and shut down or remain.  Basically they attempted to give a healthy 16 year old a heart attack.  Over and over and over again.  Later the cardiologist would tell us that this was a difficult task with him because his heart is so healthy and strong, it kept recovering itself.

There would be two options here

#1 the pathway weakens and stops sending electrical pulses, this would be low risk and no further action would be taken

#2 the pathway continues to send electrical pulses during the arrhythmia possibly causing cardiac arrest.  This would require two more catheters through the groin area into the heart.  They would determine where the pathway was located. They would remove the pathway permanently.

And we waited for what seemed a lifetime.

It was about 11:00 when the cardiologist came out to talk with us.  They were able to determine that the electrical pathway did shut down and they were not worried that it could cause a cardiac arrest.  The doctor was comfortable with leaving everything as is.  He was confident that Blake will not have any problems moving forward from here.

Relief.  Weight lifted.

The flip side of this is that Blake will always have a delta wave.  He will always have Wolff-Parkinson-White.  He faces a mental battle now of trusting his heart to carry him through.  As an athlete he pushes his body to physical limitations, he calls on it to perform.  He relies on it to be strong and predictable when required.  Up until now he's been invincible.  Now he understands that, just maybe, he isn't.

The other night the wrestling team had their inter-squad duals to kick off the season.  Blake and his friend Caleb are team captains and as such have quite a bit of leadership responsibility.  This was exactly one week after our last visit to Children's Hospital.  And I watched my Blake lead his team mates, encourage them, help them, direct them.  And he wrestled.  But, I didn't just see this talented wrestler out there on the mat, I saw everything he has struggled with over the last few weeks, the fear he has wrestled, the unknown that he has wrestled, and the awareness that he now carries.  This is his story now.  This is part of who he is, what builds him, what propels him.


To read more about Wolff Parkinson White syndrome click >>>> here.

Thursday, November 2, 2017

happy sighs




Today I am content.  Many days I am content but today has just been a little more content-esque, a little more conducive to contentedness.

It starts with the fact that there was no school today due to parent-teacher conferences.  This means that I got to lazily sleep in and it was luxurious.  I woke with just enough time to get a few household chores done, one cup of coffee enjoyed, and out the door to Maria's yoga class.

Home again and I made myself a late breakfast of chopped vegetables fried in butter and mixed with some leftover taco meat and served in crunchy taco shells.  Another cup of coffee and some journaling as I watched the rain fall.

My Blake and I went to the parent-teacher conferences.  We stopped by his French teacher's table (he's not in French this year but she adores him still).  We talked with his other teachers and all raved about my boy.  And all I can do is agree because I know how hard he works and how much he does to be as amazing as he is.

The afternoon has been spent sitting by a warm fire with a hot cup of lemon tea working on some things for my business, typing up contracts and releases.  I love every bit of it.  While the business side is intimidating (really, really intimidating) I love that this is MINE, that I am building something that I really can stand behind and be proud of.

Life lately has just been real and rewarding and exciting.

I will now explain in too many words with run-on sentences:

Real as in, everybody is working and sometimes we don't see much of each other and the dog poops in the garage and the garbage has to be taken out again and this one has a doctor's appointment and that one has a doctor's appointment too and we worry about things and there's always more to do than energy and time.  Rewarding as in, I have been having some amazing conversations with my boys and I feel like we've entered a new level of relationship that is deeper and stronger than ever before and my business has all the promise of growth that I could ask for and I've been learning and growing so much in all areas of life that I can't help but to be excited for what the future holds.  Exciting as in, at this point in growth there is no going back, I see the things that will be happening in the next little while and I am just so happy and excited and optimistic and sure that I'm doing just exactly what I need to be and there are things I can't yet share here but just be happy with me because my heart literally LEAPS with confidence and anticipation.

-happy sigh-

I need to go feed my fire and put together some dinner for my family.

Until next time!