3 choices, 1 big decision.

Let’s get caught up. Malix has been in this world for 24 hours, Cubs have won the first World Series in 108 years and now we are off to the NICU.

My memories of the NICU in Madison after birth are faint. All I remember is waiting, waiting for bad news. The funny thing is, we never really got any bad news. There was no TV in the room, so no World Series parade. The biggest event I “missed” was coverage of the 2016 Presidential Election of Donald Trump on Nov 8th.

Thursday November 10th comes and they say we can go home. The entire time in the NICU the concern was Malix’s oxygen level. Apparently his number should be 100, he was constantly around 90. I remember it being really strange they wouldn’t let us go earlier. We knew he had heart issues, so I’m just wondering why I can’t get home. This was an interesting time in our family.

Image may contain: 6 people, including Tom Kulczewski and Michelle Marie, people smiling
Kulczewski Family, November 2016

Baby born, awesome. Michelle needing to take a very long leave of absence from work, not awesome. Don’t get me wrong, I think having a parent take care of a child is amazing, I just had no idea how we were going to afford it. In a previous entry, I metioned the idea of selling baseball cards on the Internet, specifically Facebook. This is when it really takes over as a blessing to our family and changes everything, because everything had to change.

A few months before Malix’s birth, I created a business, officially named Fort Cards and Sports Collectibles, LLC. I knew of some guys that were buying boxes and cases of baseball cards from whole sellers and selling them online. I needed to find a way to make some money to cover Michelle not working. So, let’s roll. I started to do “breaks” a couple nights a weeks. Basically I take a case of baseball cards, sell the teams, then open the cards and everyone gets the cards from their teams.

After getting home from the hospital, having Malix at home was almost just like our other 3 children. Babies eat, sleep and poop. Simple right đŸ™‚

Our plan was to have Malix’s AV Canal defect repaired around May. Google does a much better job describing AV Canal defect than I can, but basically it’s your 2 walls in a heart are missing. They “started” to form with little “nubs.” The doctor needs to build a couple walls from the nubs. Apparently AV Canal defects are pretty common in children with Down Syndrome.

Christmas comes and goes and then New Years. We notice Malix sleeps a ton. Then it’s time for a heart doctor check up. All things change with that. Our Doctor has always planned on May, but now it’s go time, and it’s only Mid January, Malix is only 2 months old.

Grandma Peggy Kulczewski with Santa Malix, December 2016

We check into American Family Children’s Hospital in Madison, WI. More tests, Malix needs to keep eating, monitor him, etc, etc. The we go meet with the Doctors. Big news, not good. Malix does have an AV Canal defect, BUT it’s “unbalanced.” This means his nubs are not 50/50 for the walls to be put in. How far off are they? The surgery can be simple right? Not at all.

It turns out an Unbalanced AV Canal defect is super rare. Our Doctor has done it 4 times. He’s done thousands and thousands of surgeries, but what we need only 4!!!!! We get a crash course and apparently there is no Doctor in the US that does this all the time. I have always trusted and really liked the surgery. His real name is Dr. Anagnostopoulos. He goes by Dr. A, good for me.

After all the prep, we are ready to meet, January 23, 2017. Dr. A, in a very serious meeting gives us three choices. 1) do nothing, Malix will die in the next few months 2) Have the “safe” surgery, give Malix 1 chamber. Without further advancements in technology, Malix will likely live no more than 10 years. 3) Go all in. Do the full repair. This does have the greatest chance of not making it out of surgery, but if successful, Malix’s heart will have a chance for a true lifetime!

The meeting still seems so surreal, so serious, so huge. We only felt there was one option, #3. Let’s go all in. We are given a piece of paper to sign, then surgery can happen on January 25, 2016. Meeting done, Michelle stays with Malix, I go back to work.

One thought on “3 choices, 1 big decision.

  1. It’s very interesting to read about your families’ progress. My oxygen level was once around 48 while I was walking around an urgent care room about 6 years ago in Jackson Hole, WY, hundreds of miles from home. Everything worked out and I went home, eventually, but it’s quite a scare when you’re on a ventilator for 3 days…. On a different note, it’s very interesting knowing how Tom was adjusting, making a living for his family, which has blossomed into an enterprise. Keep it up, guys!

    Like

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