Nobody should ever have to hold their 5-year-old’s hand through a cardiac arrest. 20 minutes felt like a second, and like forever. I am so grateful, however, that I could be there with him the whole time talking to him. I’m glad I could find the words for him, and have him to focus on me and not what was happening to him.
Right now, I got nothin’ much. At least nothing eloquent or insightful. Loss for words. This just all really sucks.
Ari went into cardiac arrest due to severe rejection at 8:20 p.m. on Wednesday, March 22. His heart rate first rose and then started to drop slowly before his heart gave out. When it reached about 70 beats per minute, they started CPR and the process of racing to the cardiac intensive care unit for emergency surgery to place him on ECMO, or heart/lung life support. The machines are now doing all the work of his heart. Ari’s is resting.
Given the acute rejection that had recurred and the trauma of the arrest, CPR, and emergency surgery, his heart did not beat for approximately 36 hours. The doctors told us this was to be expected. They hoped it would begin beating again before 72 hours. It did.
However, it’s not doing any work inside his body. Life support is doing everything. Being on ECMO carries with it very serious risks of bleeding, clotting, liver, kidney, lung, and other life threatening challenges. Ari has had quite a bit of bleeding issues and his kidneys aren’t working well right now.
The hope is that over the next week or two he’ll start to recover more on ECMO. Assuming he does, they’ll be able to turn down the settings and ask for participation from his heart to operate his circulation along with the machine.
Kind of like training wheels, at first they’ll keep the wheels on and hold the seat while he figures out how to pedal. Then they’ll take the wheels off if the pedaling and balance look ok. And then, at the very end, they’ll let go of the seat and see if he rides by himself.
He’s still near the beginning. Very shaky on the training wheels with millions of land mines in between where we are now and where we need to get to.
As for right now, I’m sitting with him in CICU with the Red Sox on. Bruins were on last night. Will put the Celtics on for him at 6. Have been listening to some Grateful Dead. And we’ve been reading all the sports articles on ESPN.
If he does get off ECMO, he’ll have the typical huge hills to climb coming off of a cardiac arrest and a long time sedated and tubed, but he’ll also still have his biggest challenge waiting for him: rejection. They were throwing the anti-rejection book at him before the arrest. Now everyone is putting their heads together to figure out how to throw it at him harder.
Meanwhile, he rests. We wait. We hope that he pees, stops bleeding, and the rest of his body and organs settle out so we can see if his heart is ready to participate or not. He also has no immune system right now. None. We hope for no infections or other complications. One more thing right now would be devastating.
On another note, I’m also at a loss for words with the outpouring of support (I know that sounds cliche, but that’s what it’s been) to allow us to focus on Ari while we also demolish and build a new house from scratch, and figure out where we, Lexi, and Eli will live. Still working on that as of now. Meanwhile, we’ve spent our last night in the house we loved so much.
For those of you that have called, messaged, emailed, and sent smoke signals we really appreciate it. It’s a little hard to respond to – or even keep track of – the messages and support people have sent our way, but it’s been amazing. We read them all and it means so very much.
With Ari, the other kids, and the house, we have been lifted up by everyone. It’s awful to have to go through this – terrible to have to watch your child suffer. Yet as we go from day to day, we continue to learn so much about kindness and love.
Our sincerest hope for Ari is that we can can spend the rest of our lives teaching him about what we’ve learned from all of you.
P.S. For a guy at a loss for words it seems like I got out about 900. Be very afraid if I get on a roll…