5 weeks ago at this time, we were waiting for lab results to tell us what was making our baby so sick. 4 weeks ago at this time, we were hoping the drugs would kill the fungus. 3 weeks ago at this time, we were frustrated by the very slow progress. 2 weeks ago at this time, we were still frustrated by the very slow progress. One week ago we were waiting for our baby to die, and were told it would be any day. Today we are still waiting, but we no longer know what we are waiting for.
We are a little exhausted, but much encouraged by the fact that Mr. Bug is in a very good place. He is standing at the gates of Heaven, just inches from it, staring in, but he has not yet decided what he wants to do. He is extremely sick. He is dying. His body is giving up, one system after another, and one tiny bleed at a time. But then, maybe it is not. Last week I was watching him die. I stared at the monitor as the nurse explained to me that his lungs were full of holes, and now his blood pressure was dropping, and now his oxygen level was dropping, and the next thing that would happen was that his heart would stop. But it never stopped. It beat and beat and beat until the next day, and the next, and the next. This week, we are told that while he is still incredibly, almost irreversibly sick, the holes in his lungs have almost completely healed up and his lung scans look ever so slightly better. He has defied both predictions made about him over the past week. 1. He did not die. 2. The dialysis filter was changed, and again, he did not die. We have had another week with our baby.
One thing is certain: He is getting worse. Now, since his liver and bone marrow are not producing enough blood, he does not have the cells he needs to clot properly, and so his little capillaries are leaking all over the place. We can see the little purple spots under his skin, but these bleeds are probably happening all over his body. They tell us that it is just a matter of time before he develops a massive bleed, which would kill him. Or his dialysis will malfunction, which would kill him. Or his heart will wear out and stop, which would kill him. Or his blood pressure will become unsustainably high or low, which would kill him. Or his liver will fail, which would kill him.
So now we come to the big question of this week, the big adventure in medical ethics. This is the one thing I really know something about. As we wade through all this confusion in the physical realm of his illness, this ethics thing is the one thing I have certainty about. We are a week past the meeting where it was decided that removing life support should be initiated. At that meeting, the consensus appeared to be that it was pretty much a non-issue because he would die within a day or two anyway. It was believed that the case would never make it before the judge, he would just slip away quietly. Furthermore, the life support was supposedly causing harm to him, the ventilator was blowing holes in his lungs, the blood pressure medicine was restricting blood to his organs and needed to be stopped, changing the dialysis filter would kill him. The life support was killing him, or so they seemed to imply. Today we no longer believe this. The case has not yet been taken to court, oddly enough. There are several reasons for this. First, a doctor has to go plead the case of removing the life support. Someone has to go in person. It is a 2-minute walk to the court house, but nobody is willing to do this. Weird, if removing the life support is truly in his best interest. Second, the lawyer, who is basically Mr. Bug’s legal guardian, has many questions about the ethics and the necessity of removing life support, and after a week of Mr. Bug defying the odds, we do too. The biggest question is this: If the life support is not killing him, and at the same time, if it is not preventing him from dying “naturally,” why not let nature take its course? If he bleeds internally, he’ll die naturally. If his heart stops, he’ll die naturally. If the dialysis fails, he’ll die naturally. But in the meantime, parts of him are actually healing, and so if the life support is actually NOT killing him, why not leave it on and let his body decide what it will do next? So today we made our thoughts on this very clear to the PICU team. We will go to court about this on the 15th of May, and we are ready to battle this out to the best of our ability. In the meantime, as usual, anything could happen.
Tonight I put my hands on his little body and prayed and prayed for healing. I could feel his heart beating strong, and his mouth made kisses and his hand squeezed mine, and I realized again, like I realize every single day, that while there is life left in him, there is hope.
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