All we know is the future is uncertain so we must enjoy every moment!

Mateo had his third cardiac catheterization on October 29th, 2019. What is a cardiac catheterization you ask? It is a procedure where doctors take a thin hollow catheter and insert it into a large blood vessel that leads to the heart. They do this in order to see how well the heart is working. In Mateo’s case they went in to see how the blood flow to his right and left lungs is progressing and see if they can intervene in any way to make it a little bit better. This procedure was a different experience for me, as Kyle is now back to work so he was not able to wait with me in the surgical waiting room. Here, there are many families waiting anxiously to hear updates from their medical teams and wondering when they will get to see their child. It was challenging to be alone, though I passed the time praying for Mateo and for all of the doctors and nurses. Thankfully, Kyle’s supervisors encourage him to work from their Toronto office, so he was able to come to the hospital to see us right after work, and I was not alone for long.

Also, while waiting I met a mom whose baby had open-heart surgery only six weeks ago. She was friendly and encouraged me to join a Facebook group where parents with kids that have congenital heart conditions support each other. It was wonderful to connect with a mom who has shared these same experiences as me. As I waited I also ran into one of my friends who was at SickKids with her daughter for some testing and appointments, and she graciously bought me a tea. So, even though I was waiting alone, because the parent community is so strong at SickKids, I was never really alone. Still, it’s hard to describe the feeling of seeing your doctor walk into the waiting room, you are at the same time excited to hear about the procedure, but nervous that you might not hear what you want to hear.

The procedure went well, there were no complications, it was completed on time, and Mateo has recovered wonderfully well. In fact, Mateo was discharged home directly from the Cardiac Critical Care Unit after only one night, much to the surprise of the staff, who expect to discharge patients to other units in the Hospital and almost never straight home, especially after only one night. The doctors in charge know that Kyle and I are well trained in Mateo’s care and that it is better for Mateo to go home than to spend more time in the Hospital where the chances of catching a cold or worse are inevitably higher. However, the results of the procedure were mixed. They wanted and where able to dilate one of the blood vessels that lead to the left lung, which means better blood flow to the left lung in the future, and this is welcome news. Unfortunately, they were only able to dilate one blood vessel that leads to the right lung, even though they wanted to dilate more. This is concerning for the right lung as it means blood flow is now restricted to portions of the right lung. The problem is that because these blood vessels are too narrow to fit a catheter, and as Mateo has already had two open-heart surgeries on these vessels, there is currently no other intervention available. We all have to pray that these blood vessels will grow on their own, but there is no way to know if they will, and it is hard to accept that uncertainty.

We met with Mateo’s cardiologist and he let us know that the plan is for Mateo to have an echo-cardio gram (ECG) in January and another heart catheterization 4 to 6 months from now. We asked if their was any other options to help the blood flow to the right lung and he said that we just have to wait and see. Hearing this was hard, as this leaves us in a place where we don’t know when or if Mateo will be able to get his heart repaired. You see, at the beginning of this journey, Kyle and I felt certainty that Mateo would need one or two surgeries to fix his heart. But now all we know is that the future is uncertain so we must enjoy every moment and every minute that we get to spend with our precious Mateo that God has graced us with.

Thank you for joining us on this journey, we appreciate every comment, thought, and prayer. I am grateful for my sister Andrea who helped us with the night shifts, so we could get some sleep, for our friend Amanda who let us stay in her Ronald McDonald room, for Mateo’s grandparents for all of their support, and for Zack who does a wonderful job helping us take care of Mateo with a smile and a good attitude, this journey would not be the same without them. I encourage you to love one another, to forgive, to be kind, to give back to others, and most of all to give your time to those who you love and matter to you most, and live the Hakuna Mateo way. Don’t worry about small and insignificant things, but give gratitude for all things, as it is through gratitude and giving back that we find happiness.