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?

October 19, 2014

Valley Scare 2014

Valley Scare 2014
Todd Swank's Diary Entry for October 19, 2014

On Friday night, we went to Valley Scare in Shakopee, Minnesota to mix it up with ghosts, zombies, and monsters.

There were a lot of interesting people to meet while we were there.

They appeared to be kind of scary, but actually turned out to be quite friendly.

We had to walk by a whole bunch of these people to get from one attraction to the next.  Sometimes they'd hide and then introduce themselves in a loud, startling way but I think they just may lack good social skills.  I'm hoping the Valley Fair people will help them learn how to be better communicators.

Part of the problem may be that they were pumping a whole ton of smoke into the place with these weird boxes.  I literally felt like the Marlboro man walking through the streets.  I started feeling dizzy after only a short time being there, so I'm sure it contributes to their employees unpleasant demeanors.

Even inside the buildings there was all sorts of this smoke.  You couldn't even see your hand in front of your face it was so thick.  It's probably why the employees we met inside those buildings were so rude.  They were literally jumping out from behind walls and screaming in our faces and stuff.  I gotta think it's the smoke that's making them act that way.

Lucky for me, my wife stayed by my side and helped me get through the place.  She's so good to me.

We might try going to Valley Fair again next summer, but there's no way I'm going again this fall.  Not until they get rid of those crazy smoke boxes that seem to be making everybody who works at the place go a little crazy.

The leaves are turning colors and falling off the trees.  That's not a good sign for summer extending itself into the year 2015.  I guess the seasons changing really are inevitable.

Sure is pretty outside, though.

On Saturday night, we went out for dinner with our good friend, Tim Ashland, and we got to meet his girlfriend, Janelle.  She's a very nice lady and a pleasant dinner companion.

We even tricked them into getting into the hot tub with us at the end of the night.  Nothing like taking a bath together to really to get to know someone.

AMD Channel Chief Says Layoffs Won't Impact Partners

Are AMD's best days already behind it?" said Todd Swank, senior director of product marketing at Minneapolis-based system builder Equus Computer Systems. "I hope not. It's been survival of the fittest among chipmakers lately. And AMD has been on the defense to Intel's offense." 

 Equus, Swank said, has seen its CPU business go from 50 percent AMD to single-digit numbers today, as Intel becomes more competitively priced and offers a larger range of processors. 

"They have laid off a lot of the people I used to work with on a daily basis," Swank said of AMD.

Read Full Article Here:

Animatronic Spider Scares People That Walk Into My House

For Halloween, we bought an animatronic spider that is activated by motion or a foot pad and scares the crap out of people.  It's very fast and very loud.  We've been having fun showing it to people this weekend.

October 12, 2014

Prior Lake Homecoming 2014

Prior Lake Homecoming
Todd Swank's Diary Entry for October 12, 2014

It was homecoming week in Prior Lake, so we decided to show our school spirit and head to the game.

This was our first game of the season.  It was fun to see the Friday night lights illuminated, but I wish I would have dressed a little warmer.  I guess I still forget that it gets pretty cold in Minnesota in the Fall.  Either that or I'm just really getting old.

The home town team is doing really well this year.  Their record is 6 and 1 and they are currently tied for 5th place in the Minnesota 6a football standings.  We really need to start rooting them on some more, but it seems like they're doing pretty good without us.

The team installed a brand new score board this year that was pretty impressive.  Especially when the score racked up to 46 to 0 with more than 5 minutes to go in the half.

We enjoyed seeing the homecoming court during Half Time.  I think they were doing a fund raiser for breast cancer.  Either that or Pink is just really in style this year.

Luke had some good stuff go his way this week when he went to the orthodontist and had his braces removed!  It's nice to be able to see his smile without having to see my own reflection in his teeth any more.

On Saturday night, we headed to Mystic Lake Casino to see Masters of Illusion.

The show consisted of four different magicians doing a variety of tricks.  Most of them involved shoving women into boxes of some sort.

They did do one trick I hadn't seen before when they made a helicopter appear out of thin air.  I would have been more impressed if they would have tried to fly it around the auditorium.

One of the magicians was kind enough to invite audience members to come on the stage to witness his next trick up close.  I don't think he had any clue that so many of us would take him up on the offer, but Luke and I were able to get ahead of the crowd so we could watch what he was doing up close.

I've always been a pretty gullible person, so magicians can pull a lot over on me.  I watched him put this woman in a box, put a sharp blade through her stomach, pull her in half, and then insert swords into her torso.  Even standing up so close, I still have no idea how the trick works.  I assume she crawls up in one side, but she's got be extremely flexible to do that.

We got to meet Rick Thomas after the show.  He wouldn't tell me how he did the woman in a box trick, though.  Kind of rude if you ask me.

October 11, 2014

Focus on the Sunshine and Not on the Clouds. Update on Luke Swank for October 11, 2014

We are in a lull right now. 

Three weeks ago we were in the intensive care unit at the University of Minnesota Children’s Hospital and watching our son, Luke, struggle with a breathing tube after waking up from his liver biopsy procedure. He begged us with his eyes to give him a pencil so he could write down the words “I can’t breath”. His mother and I thought we were going to have to get his heart and liver transplant surgery any day. 

That was almost three weeks ago. 

We haven’t talked to a doctor in over a week now and have been waiting on pins and needles to hear exactly what our next step is. 

Part of me wants to hound the doctors until they call me back to give me answers, but there’s a problem with that. 

Luke is feeling really good right now. He’s back to being really happy and silly and just focused on going to school and making plans to get together with friends. I like life this way. We’ve always tried to focus on the sunshine and not on the clouds. 

I can be patient with the doctors. At least for a little while.

But since you can't ever truly stop thinking about a topic like this, I thought it might be good to just write down how we got here to help just get it all off of my mind and on the screen for a while instead. 

So here’s a brief recap of how we got where we came to be today.

My wife, Miss Sheri, and I had twin sons back in 1999. Since my last name is Swank, I had always joked with her that someday we were going to have twin boys and name them Hank and Frank Swank. Imagine our surprise when we found out our prediction was coming true. We decided not to torture them through life with those names, but chose the names Luke and Avery instead. One of the main attractions to the name Luke for us was that it derived from the word “light” and we knew this guy was going to bring a lot of bright light into our lives. 

We discovered early in pregnancy through some Ultra Sounds that our boys had holes in their hearts and they’d probably have to be operated upon some time shortly after birth. Both of our boys were going to be born with congenital heart defects and ended up needing multiple surgeries to repair their hearts and other various medical issues they encountered in their childhood. 

I started my website www.shortarmguy.com to share pictures and stories about my kids with my friends and family. 

Here’s some of the original posts where I told stories about some of their surgeries:

Luke and Avery became healthy, happy little guys and started to live normal lives without so many trips to the hospital.

The Star Tribune wrote about their first day at Kindergarten: 

Link: Enduring Hearts

Eventually we got past some of the Scary stuff and our lives turned normal 

I kept blogging on my website about their lives and started posting the crazy emails and weekly top videos that people from all over the world sent me every day. 

My site grew popular enough that I made a connection in Hollywood and he helped Miss Sheri and I land a guest spot on the TLC reality TV show, Miami Ink.  When selecting my tattoo, we came up with the idea that because we’ve been through so many tough times in our lives, it would look good on the tattoo to show my hand reaching out of a stormy sea towards a sunny sky. It was meant to remind us that no matter how many tough times we have to go through in life, we need to stay focused on the bright sky and sunshine:

We endured a bunch of scary times when our boys were little. 

But through all those scary times, I always made a promise to my family and to myself that once the boys were healthy again, we were going to live each day to the fullest. I think we did a pretty good job of doing that. 

Now some 15 years later, my various blogs literally host thousands of pictures and stories of our family trying to do that very thing.

We went to Hawaii.

Link:  Hawaii Trip

We went to NASA.

We performed comedy in front of an audience of 500 people and received a standing ovation.

We've tried to live our lives as an adventure and I hope we can all continue to do it for at least another 50 years together.

For the past 10 years or so, we've been living our lives like there were no clouds. We always knew that our boys still had congenital heart defects and Luke’s in particular was very serious. But we tried to live our lives not focused on the clouds, but rather on all the positive experiences we could have in life instead. 

This past spring, we started having concerns about the fact that Luke was not seeming to be growing like his twin brother. He also seemed to be retaining fluid in his belly. 

It turns out that the Fontan procedure is known to cause liver problems in many of the children who have had them performed. 

In hindsight, I sometimes wonder why I didn't prepare myself that we would have to go through additional challenges in our lives. I know I could have looked up fontan complications 10 years ago and seen that liver problems were a known possibility. 

But I guess I never wanted to do that. 

Today we are waiting to hear back from a new set of doctors in Chicago who we hope are going to be able to help Luke. 

Until we hear from them, we are going to focus on the sunshine and not on the clouds. 

Please keep Luke in your prayers! 

Enjoy the Sunshine! 

Todd Swank 

You can read about our most recent updates here: 

Link: Where we are at today.

Link: Luke’s Liver Biopsy