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.
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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