Yesterday, Iver had his first echo in almost 6 months. Leading up to it, we tried our best to explain to him what to expect from his appointment, but he was very fixated on getting another “big bandaid”. He’s old enough now to remember that scary, painful things happened to him at the hospital. It breaks my heart that this is a part of his story. Iver’s/our journey has been full of ups and downs and I need to work hard to choose to live life with joy and hope despite feeling like we are always taking one step forward, two steps backward.
That being said, when we walked through the doors of the Stollery cardiology clinic, it was the first time Iver seemed to relax. All this 3-year-old anxiety turned into 3-year-old courage when he recognized where we were. There are no owies in this part of the hospital. We went through once again everything that would happen during his appointment, and he finally seemed to believe me. I know many of you were praying for his anxiety, and I want to thank you so much. Iver was a complete rockstar. He was cooperative and calm the entire 3 hours that we were there.
However, I know the drill by now. When his echo tech tells me she’s sending the doctor in to take a few more pictures, I start preparing myself for bad news. It’s been 13 months since his 3rd open heart surgery, this last time receiving a brand new conduit in place of the pulmonary artery he wasn’t born with. Following this surgery, the gradient level (the measurement of the blood pressure flowing through his conduit) had improved greatly.
Before his surgery, the gradient level was up to 79. A normal person’s heart has a gradient of 5. After surgery, the gradient through his new conduit was about 14 (if I remember correctly!), which was what we were hoping for. We hoped that this conduit would last him until he was around 10 or 12 years old. However, In July 2019 (8 months after surgery, and just over 5 months ago from today), we found out that his conduit was narrowing again, with the gradient level being in the 30’s. Yesterday, we found out that it has continued to narrow and is now in the 60’s. We don’t know why it’s narrowing. It just is.
Iver’s cardiologist will be presenting him at surgical conference in the new year. She will get the whole team up-to-date on his situation, and together, decide when and what interventions will be needed. The hope is that they can try a balloon cath or a stent to open up his conduit and make it last a while longer, but given his history, a 4th open heart surgery may be in his future much sooner than we had hoped. Either way, we should be back in about 3 months for another echo, ecg and the whole shebang to see how he’s doing.
So, how am I doing? Well, since this is my blog/journal, let me tell you. It’s weird. It’s weird to have faith that things will be better, and at the same time, preparing for bad news. I think that I am so used to getting bad news, that part of me has to expect it so that I won’t be crushed when I do. We have learned that we need to roll with the punches. These things are out of our control. At the same time, we continue to have faith in God’s goodness and faithfulness, despite the horrible things that happen while we are living in this fallen, broken world.
My heart is sad. So sad for Iver and the thought of him going through another surgery while he’s so young. And then, it’s grateful. Grateful for the normal life he is living because of the interventions he has needed. I’m scared because looking at him, I can’t tell that there’s anything wrong with him. People tell me all the time that he looks so amazing and no one would ever be able to tell all that he’s been through. And I know that they’re being kind and are amazed at his strength and energy. But it often makes me want to drop to my knees and sob, because that’s the scariest part of it all. I can’t tell either! It’s so conflicting and confusing to be thankful for it, and feel so helpless because I know that even as his mother, I wouldn’t be able to tell that his heart is failing him until it’s too late. And then I’m grateful once again for how closely he is being followed by his incredibly smart and gifted medical team. And I’m thankful for health care. And I wish that I could have fully rejoiced when we were allowed to wait 6 months between echos, but I couldn’t. And this is why. The anxiety that is always in the back of my mind takes up more room as more time goes on between appointments, wondering how bad the narrowing is getting, how fast it’s narrowing, and how I would ever know by looking at him.
But, life moves forward, and Iver, if you know him, is SO full of life. He has more energy and spunk than most kids I know, and I’m thankful that he really doesn’t have any idea what’s going on. He needs to be a happy, energetic kid, and I have the great honour and privilege of being a fun mom for him. So yes, I’m struggling with all of these emotions, but God is so good and He lets me pour out my heart to Him so that He can carry this for me. He gives me the strength to move forward with joy and hope, and I could NOT do this without Him.
Please continue to hold Iver and all of us in your prayers. We don’t know what this next year will look like for our family, and it’s hard. Thank you for allowing me this space to put to words my thoughts and feelings, it’s truly healing in and of itself.
