Thank you for checking out my blog. Up to this point I have written about our son Malix’s prebirth, birth and now ready for heart surgery. This takes you to THE DAY. The day is January 25, 2017. It’s a snowy Wednesday in Madison, Wisconsin. I am your ordinary father of 4 kids. Lucky in so many ways. Lucky to have an awesome wife, Michelle, 4 great kids, Trent (7 years old), Lydia (5 years old), Matea (3 years old) and Malix (2.5 months old). I am blessed to have great parents, siblings, in-laws, etc, etc. But now I’m scared as hell.
I’ve always been able to take anything life throws at me. In the past 8 years, we’ve gotten engaged, moved from Wisconsin to Pennsylvania, got married, moved from Pennsylvania back to Appleton, Wisconsin. Had Trent and Lydia. Moved to Fond du Lac, Wisconsin (built a house in Fondy). Quit a job to take another job, that I ended up hating weeks after starting, had Matea, moved to Fort Atkinson, Wisconsin. Rented a tiny house for over a year, moved into a great house in Fort Atkinson, had Malix and now we are here. I know there are tons of blanks to fill in, but you get the picture. Our life has been a bit crazy, but it’s been fun. Stressful, yes, but fun (at least from my point of view).
Now we have decided to go for it all. Put all our trust in a life saving surgery for Malix. Malix has a major heart defect. He has an Unbalanced AV Canal Defect. AV Canal Defects are somewhat common, but the word “unbalanced” is the concern. Big concern. Basically he has no walls in his heart, but there are “nubs” for the walls. But they are not 50/50. The vertical “nubs” are more like 60/40. Not good at all.
Up to this point, I am confident we are putting our son’s life in one man. That man is Dr. Petros Anagnostopoulos. From now on, I’ll call him Dr. A. I’m scared, mainly because I’ve never put someone’s life in one person’s hands. It’s his “job” to rebuild his heart. We are told it’s going to be tough.
Let me pause for a moment. I grew up going to church weekly at Fairview Center United Methodist Church, outside of Monmouth, Illinois. I believe in God / Jesus. I always thought of myself as a very strong Christian. Going into this day, I would tell you that Jesus will protect him. Ok, let’s be completely honest. Did I truly believe that? Maybe to a point. In reality, my faith has never really been tested. I’ve never gone though real tough things. Back to THE DAY.
Malix and Michelle have been at the hospital for 5 days. 5 DAYS! Hanging out, eating, growing, sleeping and staying strong and healthy. Most of those days I would work, then come up at night. The night of the 24th, I stayed all night at the hospital. They have parent rooms. Malix is scheduled to go into surgery in the morning.
Leading up to his surgery we discussed how we would communicate. We decided to use Facebook. I thought this was one of our better choices. Then we could control the message and we could interact directly in our down time. Leading up to Malix’s surgery, we asked friends to wear red for him on surgery day.
The morning comes. I get up, walk down to his room. I can remember exactly what I was wearing. I was wearing flip flops, Indiana Pacers game used shorts (thanks Vance) and a UW Badgers Red Fleece. Michelle is sitting in a rocking chair, looking scared as can be. Crying like any parent would. Looking outside, it’s snowing! Beautiful Wisconsin winter day. Michelle needed to quick shower, she hands Malix to me, I sit down. Why is he so wet? Michelle gets upset at me for asking the question and tells me it’s her tears, that she has been balling her eyes out since he woke and it was just her tears. My job now is just to cuddle him while she quick showers. I hold him up. That kids is a jokster. Our first sign of God for the day. I believe humor is huge. I also believe 100% that God had Malix poop all over me. It was beautiful. Here I am, scared dad, covered in poop. Thanks kid. We get him changed and I am covered in poop. I make the walk to get changed, by all the Doctors and nurses, it was the comical relief we needed!
Changed and back in the room. Waiting for Dr. A. At this point Michelle’s sister Amanda has joined us. Doctor A comes in. Looking upbeat and super excited. “A great day for surgery! My teenage daughters are home with a snow day and I’m really excited to come to surgery!” That was awesome. Here we go, he’s excited, I’m scared, but ready to go.
We are expecting a lot. I’ll keep this really simple. They are disconnecting his heart, building a couple walls, then reconnecting his heart. The reconnected heart will not beat normal. In fact there will be some huge machines he’ll be connected to that will keep his heart going. But the big thing is that the heart needs to have some beat on his own. Without that, it’s all over….
He’s off to surgery. Hand Malix over to a nurse. We have our pager with updates. We just handed our son to have his chest opened and his heart repaired. That was it. Is that it? In reflection on this day, what a moment. Not just any kid, our son. He is now not in our care. Tough stuff. We know a successful surgery will be no less than 6 hours. So we have time. The main keeper of our time was checking out all the awesome support on Facebook. We are truly blessed to have so much support in red for Malix! We also walked around.
We walked outside, we walked inside. We walked everywhere. It was really icy out, so outside was probably not the best venture. We then checked our pager. During the morning we received a few pages. All good stuff.
Michelle found out Chapel was at noon. She really wanted everyone at chapel, together. Everyone was praying for Malix, we might as well go too. In chapel it was Michelle’s Parents (Jim & Kim Casper) and Michelle’s Sister (Amanda Werner) with Michelle and I. I was glued to the pager. Nothing, zero updates during chapel. Frankly I am not scared as hell. But for the first time in my life, I put everything in the hand of god. I thought I had before, but it was nothing until this moment. Then we decided to go back to the room.
Walking down the hall, approaching the nurses station. No nurse wanted to look up and make eye contact. That’s not good. All the nurses were very friendly, but now, they didn’t want to say hi. Then I see one of the doctors from our team on the telephone. Why is she up here? She should be in surgery! This is not good at all.
We go into our room. A nurse tells us the doctor is looking for us. We have not heard anything and now they are looking for us!?!?
The Doctor comes in. She looks happy, yet confused. She tells us right away she has some good news. Here it goes: Dr. A was able to repair the heart and got him back together. Then it was time to hook up his heart. They needed and was expecting a slight beat, very slight, but the machines would take over, needed the slight beat though.
They hooked his heart back up. Nothing, completely nothing. They put his heart back off line and ran it with a machine. I know I’m not using the correct terms, it’s a blog not a medical journal. 🙂 Dr. A then relected, what did he do wrong, why was he getting nothing. He wanted to try again. He connected it again, nothing. Absolutely nothing. This is horrible! Now all the Doctors are very concerned. This Doctor came upstairs to find us. We needed to now be in on the situation. She came to tell us our son may not make surgery. At best they could repair his heart to make it one big chamber. This was actually one of the choices we had. It would give him 10 years (at most) to live, baring no medical advances, or political advances for a heart transplant, since he has Down Syndrome and is discriminated against a new heart in the state of Wisconsin. I’ll get that changed.
Back to our Doctor, she came up to tell us this news. Tough news for any parent to hear, but this isn’t any parent, this is US! Our life, our son!
When she came up, the nurses told her we were at chapel. Our Doctor thought that was the best place for us at that time. While we were at chapel, Dr. A went for it a 3rd time. There is no medical reason why the heart would even have a slight beat on the 3rd time. Then it happened. BOOM!!!! The Miracle Happened.
Not only did Malix have a slight beat, this kid’s heart beat like normal. Our Doctor received this news via the phone while she was waiting for us. While we were praying like no other. I asked how this could happen. Simply put, “there is no medical reason why it worked.” No reason why his heart is beating, no reason why we don’t need a huge machine with him to keep his heart going. He’s a Mighty Guy. It’s truly a Miracle.
Less than 2 hours later, Malix is back in the room. Hooked up to tons of medicine and monitors, but not a machine to beat his heart. He’s still out and will be for a few days. Chest is open and you can see his heart beat. One of the craziest things in the world to physically see a heart beat. Recovery is now beginning. Full successful recovery. I can’t wait to share more soon!
Malix 