Friday, September 17, 2010
It's just another ordinary miracle today...
Life is like a gift they say
wrapped up for you every day
open up and find a way
to give some of your own
Isn't it remarkable?
Like every time a raindrop falls
It's just another ordinary miracle today
-Sarah McLachlan, Ordinary Miracle
(great song - watch the video if you don't know it!)
Over the past 6 weeks, Jay has seen quite a few miracles. I don't mean to trivialize open heart surgery, but getting a new heart valve that works as good as new was one of the smaller miracles he survived. When Jay arrested the night after his surgery, they performed CPR on him for well over an hour, and continued doing chest compressions WHILE the surgeon placed the cannulas in his neck for bypass. Just imagine that for a second - trying to cut open a tiny vein and an artery just a few inches from where someone is pounding on his chest. Miracle.
The following day the attending cardiologist was discussing what had happened during the incident. (One nurse spent the entire time writing down everything that they did to save him and every drug he was given. Jay was still connected to the monitors, so they had a complete record of his blood pressure, etc. the entire time.) His oxygen saturation never dropped below 70% during the time they were performing CPR. While 98-100% is normal, there are people walking around living normal lives with oxygen sats in the 70s. Pretty impressive work.
Derek and I were talking about all the things we see differently in hindsight. When the surgeon came in on ECMO day 2 and asked them to turn down the sedation, he was wanting to see if he would move. Looking back, we realize that he was trying to determine whether continuing on ECMO was worth it - trying to know whether his brain had gotten enough oxygen during CPR to keep him on life support.
It was no small miracle that he had no problems on ECMO. He never had any of the common issues - swelling, blood clots, ECMO circuit cutting out. And it's nothing short of a miracle that after a week of not pumping, his heart was able to kick back in when he came off ECMO. It's a miraculous technology that saved his life.
On Tuesday evening when we had finally been given the get out of jail free card, we met with our awesome CHOP cardiologist, Dr. C. She hugged us and talked about how happy she was with how he was doing. I asked her to say - honestly - whether this was the outcome she expected during the ECMO days. Her sly smile said it all, but her simple answer was as honest as I had asked her to be: "No, it isn't." She went on to say that after ECMO sometimes the heart recovers but the brain doesn't. Other times, the brain recovers but the heart doesn't. She told us that his medical team was still talking about what a miracle it was to see him laughing and talking and trying to jump down the halls of the CCU.
I don't think we really expressed on the blog just how serious the heart transplant discussion got toward the end of the ECMO week. While he tolerated ECMO very well, seven days is really pushing the limits of how long it can provide support. They were getting ready to order a Ventricular Assist Device, the Berlin Heart, in the event that his own heart function didn't recover. The VAD is designed as a bridge to transplant - a machine to support the heart while you wait (days or weeks or months or more) for a transplant. That thought was terrifying to us. The thought that another child would have to die so that ours could live ... it's just awful.
Miracle. There's no other word to describe where how we got here. It is truly a miracle to have our son back the way he was before this awful journey began.