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Archive for July, 2016

One year ago, Ben and I sat in this same room and watched the 4th of July fireworks from our window.  He had been readmitted to the hospital for a fever after he had open heart surgery.

Today.  We sit in the same room after another successful heart “procedure”. How did we get here?  A year ago, Ben’s surgeon told us that we would be good for another 10 years of any heart intervention. Today, Ben’s surgeon told us that today was successful but that we are locating at several more heart “procedures” in the future.

A lot has happened in a year. The good feeling that we had after last year’s surgery left us after another month in the hospital.  Then we regained that positive outlook when we sent Ben back to school and our world seemed to return to a Lake kind-of-normal. Then by Christmas our world started to slip and that positive medical outlook for Ben went away again.

Then in January, Ben’s health took a nose dive.  The stenosis in his pulmonary artery had grown, his dizziness was so bad that he couldn’t attend school anymore, and started our steep decline in the crazy science of medicine.

The best part about doctors are that they are inquisitive and curious.  They like puzzles. Ben was certainly a puzzle. We saw 7 specialists in four months.  They all performed a ton of testing and no one could tell us what was causing Ben’s problems.  When doctors get frustrated because they can’t solve the puzzle, they declare their organ system as good and not the cause of the problem, and send us off to yet another doctor to investigate another organ system.

Today, Ben received a new pulmonary valve.  It is called the Melody valve.  He also received a stent in the pulmonary artery.  The good news is that he was able to receive all of this work through the cath lab. Less intervention. Easier recovery.  Perfect for Ben.

The doctor stated that it was good that we intervened. The first thing that the doctor does in take measurements of the heart while they are physically in the heart.  The pressures in his right ventricle were 90% of his blood pressure.  This is bad.  Much worse than the echo revealed.  His heart wall has thickened significantly as well.  This explains why he was so tired and exhausted.  His heart was working overtime.

But this doctor was wonderful at not sugar coating the future for Ben.  There was no 10 year prediction of no surgical intervention.  No promise that Ben will be able to be a normal boy again.  The doctor was wonderfully honest.  He predicts that Ben’s health will not prevent him from living a long and fruitful life.  But . . . this valve is so new that there are not long term studies that she how long this valve is good for.  It is not an adult size.  He will need another one as he gets bigger.  He continues to have another narrowing in the pulmonary artery.  They fixed the one at the donor site, but they will probably have to intervene in the future with another stent. He could possibly start to have dilation in the aorta because of the Ross-Kono procedure and may need a replacement of the aortic root in the future.  Possibly.

Here’s the deal.  Chris and I do better if we know all of the possible outcomes.  It is better to prepare for the worse and hope for the best.  It is a lot harder to deal with health issues with Ben when you feel as if they have come out of no where and you are blindsided.  That is how it felt for most of this year.  Blindsided.

The doctor asked us today what our goal was for Ben.  What sport were we trying to get Ben  playing again?  We have none.  He has been living a life with so many rules that regulate his ability to be physically active that I don’t know WHAT he would want to do if he felt like a normal boy.  Does he even know how it feels to be a “normal” boy?  You know.  The ability to run and play without thought to being hydrated appropriately, chest pains, exhaustion from the simplest of exertion, etc. Wow. What a wonderful life that would be.

Our goals are not even that huge.  I told the doctor today that I just want Ben to go back to school next year, to have enough stamina to make it through a day of school, and maybe . . . just maybe . . . be able to ride a bike in the summer with his friends.

I think that Ben wants this too.  We pray, not for normalcy, but for Ben’s health to be abnormal for him.  In other words, like most children.  Free of restrictions.  Free of fear that some of actions could cause harm to his body. Free of constantly being poked and asked for samples.  We want to assign him chores.  Teach him to mow the yard. Ground him for hanging out with his friends too long and missing curfew.  His sisters want to tattle on him and not have to feel sorry for him.  They want to tease him and love on him and not have to worry about Ben’s health or something bad happening.

But Ben told us something the other day.  He told Dad that most of his friends have been made because of things that are wrong with him.  He has learned to make the best of the situation.  He is making lemonade out of the lemons of life. We have learned so much from “the boy.”  His strength makes us stronger as parents and most importantly as humans.  He will still admit when he is scared and talks about those fears that we all think about but are too afraid to say out loud.

We will learn from the latest procedure.  Not just how to navigate the healthcare system, but how to better handle ourselves emotionally.  How do we get through this without losing ourselves in the process?  How do we hold out hope when things seem to be going wrong?  Our faith brings us pretty far.  But it also the people that God sends into our lives to let us know that we are cared for and loved and are not forgotten.  If God can give hope and promise to “the boy” that there is a future for him without all of the medical issues, then how can I not try to have the same.

 

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