October 25, 2014

A Trip to Lurie's Children's Hospital for a Heart & Liver Transplant Evaluation

A Trip to Lurie's Children's Hospital for a Heart & Liver Transplant Evaluation
Todd Swank's Diary Entry for October 25, 2014

We took Luke to Chicago this week for a second opinion on his heart and liver transplant.  There's a lot of traffic in Chicago.

Here’s a previous blog post which explains Luke’s medical situation. 

So the University of Minnesota couldn’t come to an agreement on if Luke needed a heart transplant or heart and liver transplant and they told us we should get a second opinion at another transplant center.  They told us they recommended us to try St. Louis, the Children’s Hospital of Philadelphia, or Lurie’s Children’s Hospital in Chicago.  We had different reasons to consider each, but felt good about Chicago because it was only an 8 hour drive from home and I had some surgeries there when I was a child and lived in nearby Mount Prospect, Illinois.  My brother in law, David Kelley, sent me a link to the best children’s hospitals in the country and I was excited to see Lurie’s was listed as the number 2 liver hospital and they were also #15 for heart conditions.  So we told the doctors that’s where we wanted to go.

Now before I share what we learned from the doctors during our two days of tests and consultations, it’s important that I preface this that Luke’s case will be presented before a board of doctor’s and surgeons next week where they will formally discuss his case and make a list of recommendations.  But we did probe each doctor to find out what they were going to recommended to the panel and this is what they told us.

Rather than make you wait through a long story, let me sum up the good news we heard.  Neither the heart team nor the liver team is going to recommended Luke get either a heart or a liver transplant at this time.   Yes, Luke does have early signs of cirrhosis in his liver and it is most likely his heart condition that’s causing it.  But the cardiac surgeon told Luke that functionally his heart is working as good as his own heart was working.  There’s no reason to transplant it if it’s not failing.  Most likely what they’ll recommend is for him to get a pace maker which will help regulate his heart better and hopefully help get rid of the fluid that builds up in his belly and slow down the flow of blood that is causing damage to his liver.  That’s most likely what we’ll do along with some changes in medication.

The liver doctor also told us that yes, Luke does have signs of damage in his liver but nothing that seems to be actually negatively affecting the function of the liver at this time.   He believes there’s just no reason to rush something as serious as a liver transplant.  He will share his opinion with his team and they will make formal recommendations at the end of this week.

Yes, we heard good news that these genius doctors say a transplant isn't needed at this time but Luke also heard very stressful things that he never realized about himself before.  Things like people who were born with Luke’s condition are surviving today longer than they ever have before.  Things like a heart transplant isn’t a solution.  It’s trading one set of problems for another.  Yes, he will get to achieve his dream of riding roller coasters if he gets a new heart, but he’s going to need to take anti-rejection medicine for the rest of his life and that stuff ain’t pleasant.

These kinds of stories were then followed by statements like “he doesn't need a transplant today, but when he does need one in a few years this is what his life will be like.”

On the drive home from Chicago, we talked about Luke’s feelings. 

It’s hard for my family to understand my emotions during times like these.  I get silly and jokey while they’re still absorbing the somber opinions we just heard.  They don’t want me to make inappropriate jokes at this time even though I tend to do that kind of stuff regardless of what situation we have to face and you think they’d get used to it but that’s for another blog post. 

I tried to focus on the fact that it sounds like we’re not going to be listed for a heart or liver transplant today.  Or probably not this year.  That’s a good thing.  But of course, it’s still scary to think about the future. 

So we go back to all the lines we tell ourselves in life.  Things like nobody knows how long they have it on this earth.  Everybody’s lives are tenuous.  Tragedies happen every day.  Car accidents,  Diseases.  People can die a thousand different ways on this planet.  But you can’t live your life focused on that fact or it will drive you crazy.  You truly need to live every day to the fullest.  If you’re not happy with your day, then do something to change it so you have a better day tomorrow.  All of our days on this planet are limited.

Let me ask you a question.  If you knew a billionaire and he found out he was going to die tomorrow and you could go to him and say you have a secret cure that nobody else knows how to do, but if he pays you money you can share it with him.  How much do you think that billionaire would pay you for just one more day on this planet?  A million dollars?  $10 million?  A billion?  Or maybe even his entire fortune?  I’d guess there’s different billionaires alive today that would pick each of those amounts.  The point is they would pay those incredible sums of money because of a simple fact.  Time is way more valuable than money.

So live each day as if it were your last day.  Don’t get bogged down by all the negative emotions in life.  Stay focused on finding the happiest emotions you can experience and live your life trying to experience those feelings.

One doctor we talked to had an unsettling response to my statement that I’m a big believer in technology advancements will help Luke have an easier time with this down the road.  He said to us that he doesn't think technology will be able to do anything new for us in five years.  His rationale for that is that anything that would positively affect a child would be already being tested on 70 year old people today.  They wouldn’t experiment with new procedures or techniques in a child so there probably won’t be any radical advancements in the next few years.

I think hearing opinions like this are stressful because it makes us question what life is all about and why the heck am I facing such an uncertain future with seemingly sound reasons to not have hope?

I told Luke that there’s one thing more powerful than any of those experts understand.  He’s got God on his side.  And literally hundreds of people praying for him when he needs it the most.  Sure, his weirdo dad overshares our lives on his websites and Facebook every week.  But with the incredible strength and determination of this child backed by this network of friends and family that help us with the incredible power of prayer are enough to get us through any challenge.    

And we want to believe that and live our lives that way.

The bottom line on my feelings right now are I love my kids.  I love my wife.  And Life can be really hard.

 But despite facing fears recently of a life changing procedure that would cause us to have to spend our lives living in a hospital hundreds of miles from home for months, we might be good for a while.  We might get to go through Christmas this year at home with our family.  We might be able to take another big vacation next year.  We might get to graduate high school with the other kids in our grade without further issues.  And those are all really good things. 

Let’s focus on the good things.

Thanks so much for everyone’s prayers and support for us throughout this process. 

We really couldn't have done it without you!

The people in Chicago were so nice.  They were going to try to have us stay in the Ronald McDonald house while were there but unfortunately for us, it was booked full every night.  So the Social Worker, Rich, reached out to Kaley at MileNorth Hotel which is next to the hospital and they agreed to put us up for four nights at no charge to us.  We ended up only staying one night before going home, but their kind generosity was so appreciated!  

Of course, we had to check out some sights while we were in town.  Water Tower Place was nearby so we thought it would be fun to walk over and check it out.

They had really cool fountains next to the escalators.

They had some incredible shopping options and the view over the balcony was quite intriguing.

The best part was Harry Caray's restaurant at the top of the building.  

I didn't think I had much of an appetite, but MAN was that malt GOOD!

HOLY COW!  Harry Caray's sure is a fun restaurant!

It also has the Chicago Sports Museum right next door!

It would have been fun to be around Scottie Pippin when he was a baby.  I would have loved playing the game with him where we stretch out our arms in front of each and other and I'd exclaim:

"Scottie Pippin is SO BIG!"  

Then we'd giggle to one another and do it again.

Luke tried hard to match Michael Jordan's vertical leap, but neither one of us had much luck getting there.

We didn't have much luck matching hand sizes with some of the legendary Chicago Bulls players either.  Oh well.  
What are you gonna do?

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