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.
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:
Link:
Avery’s Heart Surgery
Link: Luke’s Fontan Surgery
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:
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
Link: Kennedy Space Center
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
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
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