I am not a patient person, not at all. I acknowledge this as one of my weaknesses, but frankly I think it’s a strength. Malix is not patient either, and after his heart surgery on January 25, 2017, that is just fine.
Our journey, we last left off when Malix returned from surgery. Late afternoon on a snowy Wisconsin Wednesday. Now we (Michelle and I) are in his room with him. Oh, he’s still out and will be for a few days. Hooked up to dozens of monitors and dozens more wires. The biggest thing I could not take my eyes off was his heart. His heart? Yes. He came out with his chest open, covered by a transparent covering. You could see it beat. It was incredible, frighting, crazy, scary, beautiful all at once.
The lead Doctor is Dr. Petros Anagnostopoulos, MD, MBA, FACS. (Dr. A) He’s the Surgeon in Chief at University of Wisconsin, American Family Children’s Hospital in Madison, WI. He saved our son’s life. That simple, that complex. We would get to know Dr A much more in the week ahead. I wrote about him in earlier posts, but he’s worth writing much more about.
After surgery, we were with family in the waiting room. Dr. A came to speak with us. We stayed in with our family. Dr. A was calm, optimistic, but didn’t want us to get to excited. I remember Michelle’s brother, Kevin, thanking him. Dr. A responded “Don’t think me now, thank me when Malix leaves this place.” That stuck with me that the surgery is over, but there is a very long ways to go.
Going into surgery, we really had no true idea how long recovery would be. Days? Weeks? Months? No clear idea. Dr. A never gave timelines. He stuck by day by day steps. Told us some steps would be forward, some backwards. Be ready for days with no steps.
My favorite part of each day of recovery was the morning rounds. Our hospital is a teaching hospital for the University of Wisconsin. Each morning Dr. A would be with a group of students. He would question them on each patient, etc. He would ask the group of students, how do we proceed with Malix. They all had blank stares. “LIKE A TURTLE.” Slow and steady. You will want to push him, because he is a pusher patient, but he’s a Turtle. Dr. A would then tell the others how he made great gains, but would have set backs.
Then the next day. He would say “LIKE A TURTLE.” Malix had great gains, but would have set backs….. same thing the next day. Guess what, Malix is a fighter, impatient, can do it himself and nothing is going to stop him. 3 years later, he’s still the most determined kid I’ve ever met. It’s awesome!
In my mother’s battle with cancer, she would often tell me that it’s “Like a Turtle.” She loved this line and so do I. I believe I received my lack of patience from her. She would agree it’s not a bad thing. Having her pass on April 25, 2019 still hurts. She loved Malix and would love to see his impatience now!
Surgery as Wednesday, on Friday his chest was closed. On Saturday, we brought Trent into to see his little brother. To this point, the kids have not seen him. It was tough to show a child their sibling, laying there with dozens of monitors and medicine cords attached to him. Trent insisted to see him. It was a special moment!
The next day, it was time to wake up Malix. The nurses were shocked how soon he was ready, they shouldn’t have been. Malix does things on his time and that time is NOW! Taking Malix off of sedation was a scary time. Then a cough and breath on his own. We can now hold him. To this point he had to lay flat and still in a small bed. We were able to have the other kids see him. This family picture really captures it.
That picture says so much to me. The first thing you may notice is the cords / wires from Malix. That is nothing. He had so many more before. That was the “light” cord duty. I see a tired family, one that is going through something very few do go through. This experience changed our life, no doubt. Malix is now our inspiration really completes our family from before he was even born.
Just a quick side note, it’s my blog so I don’t need permission to go “preachy.” So many people say something to the effect of “I can’t imagine.” Guess what, I don’t care if you can imagine or not. Frankly I feel a statement like that basically says, I don’t care about what your going through, I’m so selfish that I try to turn every situation about me and I can’t do it. How about saying this instead: “You are doing great. I support you and am always here for you.” I know this will offend some people, but I can’t imagine what it’s like to be offended by it. 😉
Back to Mighty Malix kicking butt. Around Sunday I’m ready to get out of the hospital. He’s awake, he’s a love and needs lots of sleep. He can sleep at home, is what I’m thinking. Sitting in a hospital room all day makes a strong minded parent ask a lot of questions. Well, sometimes care givers don’t always appreciate all the questions. We had a nurse that would get bothered by us always asking why and when. Looking back on it, maybe (just maybe) I asked to many questions. Dr. A sat Michelle and me down and gave the greatest compliment we could get. He told us that as parents we are 3 standard deviations to the right and that nurses don’t always know how to deal with such great parents. Using Standard Deviations to describe someone as a parent if fantastic. I love him for that (and for saving Malix’s life).
Well, the day has come. February 6, 2017. We can go home. We know we’ll be back, but now it’s time to go home and be a normal family. Guess what, normal is boring. I have this little side business that is about to take off, I teach college class one night a week and work a full time job as Director of Buildings and Grounds for the School District of Fort Atkinson.