Yesterday morning Jeremy and I showed up at the hospital for rounds just like any other day. Except this day was different.
As soon as we walked into Knox's room we knew just by looking at him what was happening: He was NOT getting better. He wasn't even staying the same. Unless something changed, he wasn't going to make it.
It's not like he drastically changed overnight. For the last week or so, Knox has very gradually gotten worse. Every day he gets a little bit puffier, puts out a little less urine, and breathes a little bit faster. Yesterday was no different, but something clicked in our hearts and minds that morning. If we don't do something Knox is going to die.
After rounds I spent some time alone with Knox. I held his hand and stroked his hair as usual. And then we had a conversation. I told him that I love him with all of my heart, and that I want him to be happy. I told him that I wouldn't be angry with him if he wanted to give up. I told him that no matter what he chooses I would do my absolute best to make sure he gets what he wants. Then I asked him if he wanted to go Home. I asked him if he wanted to stay with mom and dad.
And when I asked if he wanted to stay he squeezed my finger. so. hard.
Understand that this kid is not mobile. He is so puffy that he can barely move his fingers right now, let alone squeeze. He also is on more sedation than he was a few days ago and has been sleeping almost all day and night.
Now I know this might seem silly to some, or just a coincidence, but I know in my heart that Knox was trying to tell me something.
But, what could we do?
We went about the rest of our day in tears. Racking our brains trying to find some way to help him.
He is now too sick for a transplant, and for the surgery I mentioned in our last post. He is too small for dialysis, and ECMO (the nasty bypass machine that he was on before) is too risky at this point. It seemed there were no options left.
Then I got on my knees and I prayed.
I didn't pray how people pray when they are at church or in public and sound all refined and collected. I prayed like a crazy person. I sobbed and sobbed and eventually ended up on the ground in a ball. I can't really tell you what I said because it was more like an incoherent jumble of words and thought that only makes sense in my head.
And then we got a phone call from the doctors. They wanted to meet with us. They said they think they found something.
Right Ventricular Assist Device. A little machine that does what the right side of the heart is supposed to do. It will basically bypass the leaky valve and do mechanically what the surgery they were talking about previously will do permanently. Their hope is that this will allow his heart to pump strong enough to get blood to the kidneys and help them to get rid of the fluid. When the fluid is gone then everything else in his body will work better, and in a few weeks he would be well enough to get his surgery. If this machine works it will also be a good indicator that the surgery they had planned for him will also work.
Of course there are risks. He might not tolerate the process of getting hooked up to the machine. They might not be able to get the machine hooked up. It might not work.
The biggest risk is that this hasn't really been done before. These devices are meant for the left side of the heart, to help patients hang on while waiting for a transplant. The doctors couldn't even find medical literature to support using this machine in this way. We are operating on the skill and knowledge of our surgeon and doctors, and mostly on faith.
But, its something, a last resort, and if we don't try it he won't have a chance at all. So this afternoon Knox will go to the operating room for his last fighting chance. It will either work, or it won't.
Whatever happens, we know we have all tried our absolute best to help him.