Day +102
Mike and I met with representatives from all of the medical teams caring for Max to discuss his overall health. Each of Max's individual problems range in severity and likeliness of being treatable. But with all of the problems combined, the doctors have given Max a less than 1% chance of surviving. And if he were to survive his quality of life would be greatly compromised.
For the past several days we have been discussing just how far we want to push our son. We have already decided against any major intervention such as chest compressions if he codes, chest tube placement if his high vent settings cause an air leak in his lungs, and any other major procedure unless the team feels it will greatly benefit him. At this point, they do not have any other treatments to add and have said we have come to a point when we cross the line between doing things for him and doing things to him. Though we have been realizing all of this for several days now it is still difficult to take. As one of the doctors said, it is hard because the doctors at this institution are willing to take things very far and then it seems suddenly they have stopped. We asked them if there was anything in the back of their minds to try, no matter how dangerous, and they all said no, nothing that he could survive. We have so much trust in them that we know that if there was something they could do for Max they would be doing it. Now we are left with many difficult decisions, decisions that no parent should EVER, EVER have to make. But we must make them nonetheless.
First and foremost we are going to make Max comfortable. In the past few days it appeared to us that Max started to have more pain. He had been receiving a paralytic to help him on the vent, making him unable to move and therefore indicate pain to us. He had moments between doses where he would move a bit and he seemed okay. But very early yesterday morning in between doses he seemed much more uncomfortable. His pain medications have been increased dramatically several times since then. With the increase of these medications, we run the risk of bottoming out his blood pressure which has been kept up with the help of pressers for several days now. We understand this risk and know that our efforts to make him comfortable may take him from us.
The doctors also gave us the option of withdrawing his life support. We are struggling with this decision. The benefit of doing this would be to offer Max some sort of dignity in death. We would be able to hold him and comfort him and surround him with love. But this is weighing heavily on our conscience, and we have not decided anything yet. While we agonize with these decision however, we are risking a more severe episode for Max that could take him when we are less prepared.
We realize that this is very hard for people to read and accept. We ask for your continued prayers so that we may make the best decisions for our son.
Love,
Margaret & Mike
For the past several days we have been discussing just how far we want to push our son. We have already decided against any major intervention such as chest compressions if he codes, chest tube placement if his high vent settings cause an air leak in his lungs, and any other major procedure unless the team feels it will greatly benefit him. At this point, they do not have any other treatments to add and have said we have come to a point when we cross the line between doing things for him and doing things to him. Though we have been realizing all of this for several days now it is still difficult to take. As one of the doctors said, it is hard because the doctors at this institution are willing to take things very far and then it seems suddenly they have stopped. We asked them if there was anything in the back of their minds to try, no matter how dangerous, and they all said no, nothing that he could survive. We have so much trust in them that we know that if there was something they could do for Max they would be doing it. Now we are left with many difficult decisions, decisions that no parent should EVER, EVER have to make. But we must make them nonetheless.
First and foremost we are going to make Max comfortable. In the past few days it appeared to us that Max started to have more pain. He had been receiving a paralytic to help him on the vent, making him unable to move and therefore indicate pain to us. He had moments between doses where he would move a bit and he seemed okay. But very early yesterday morning in between doses he seemed much more uncomfortable. His pain medications have been increased dramatically several times since then. With the increase of these medications, we run the risk of bottoming out his blood pressure which has been kept up with the help of pressers for several days now. We understand this risk and know that our efforts to make him comfortable may take him from us.
The doctors also gave us the option of withdrawing his life support. We are struggling with this decision. The benefit of doing this would be to offer Max some sort of dignity in death. We would be able to hold him and comfort him and surround him with love. But this is weighing heavily on our conscience, and we have not decided anything yet. While we agonize with these decision however, we are risking a more severe episode for Max that could take him when we are less prepared.
We realize that this is very hard for people to read and accept. We ask for your continued prayers so that we may make the best decisions for our son.
Love,
Margaret & Mike
posted by Mike Ciacciarelli
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