Plans

I have spent the last week trying to get organized. In a sense I am creating our game plan: the who, the what, and the where of our latest medical crisis. There is good and bad in this process. The good is it makes me feel in charge of a situation which is ultimately out of my control. The bad, well the bad is really pretty simple, with planning comes the realization that this is all real, Max needs another open-heart surgery. It still takes my breath away just writing or saying these words.

This is not how things were supposed to go. Eight years ago in the parking lot of a medical building I accepted that things would not go as they were supposed to when we first received the news that our baby was not healthy, he had a heart defect. Although I knew this changed everything I also knew (because we were told) that all this really meant was that Max would need an (one, singular) open-heart surgery to repair this defect. We were told that he would go on to be a “regular kid”, no worse for the wear. No one could have known that Max would be far more complicated than this. His one open-heart surgery has turned into 36 procedures, four (and soon to be five) of which are cardiac surgeries. How did this happen? Why am I still not used to this whole thing? The “how” is still being studied, Max has what they call in the medical world an “unspecified” syndrome. The “why” is because there is NO way to EVER get used to the fact that your child has to endure all of this, day after day, every single day of their lives.

So back to the planning…..I have spoken to several of the docs, the genetic specialist, and other medical staff at Hopkins who have cared for Max these last few years so I’m starting to see their care plan emerge and this allows for all of us to plan. I have spoken a few times to our local “cardiac hero”, Dr. Teodori who has been Max’s surgeon since birth. He has helped us get in touch with a pediatric cardiologist in Tucson who will manage Max’s cardiac care here at home. (If you consider Tucson, a city two hours from our house “ home”. But that’s a story for another post.) I have set up an appointment for Max with this new doctor so that we can introduce ourselves and get our plan in order with him. We will need this doctor to get up to speed quickly on Max, collaborate with Dr. Teodori, and most importantly with the surgeons and doctors at Hopkins who will eventually be doing the valve surgery.

In the few phone conversations I have had this last week with Dr. T I have also been hit hard with the cold reality that my son is truly a medical conundrum. His condition is so extremely rare that no one is able to figure him out. I unfortunately came to the conclusion that these doctors have always thought of Max as an unknown. No one could have known what his path would be and they still don’t know what it will be in the future. All of this has actually lead me to a very big, black hole – does this unknown include an unknown outcome? We know that Max long ago surpassed the one surgery, no worse for the wear phase but does this unknown factor mean that Max’s future is uncertain. I’m crying as I type this but I have started to wonder if my son’s doctors think all of these issues indicate an unfavorable outcome for Max. I can’t bring myself to type what I really mean by this but I will tell you that I voiced this concern to Michele the other night and I clearly knocked the wind right out of him and he asked me to never say it again. And so I won’t, but not just for him but for me. We can’t afford to waste precious time on negative thoughts when there’s so much planning to do for our son’s future.