Update on my boy We are being sent to the next hospital. We started with a transplant hospital because of our concerns with his liver. Because we are going in through ER once a concern is addressed insurance won’t approve anything else. He is so complicated that they are literally just guessing and running test. Here is what we know ( don’t want to risk doxxing ourselves so I am editing but will be happy to elaborate in dm) The blood cancer is not the issue and his liver is not the issue. Back to pediatrics and the hope is that because pediatrics has more freedom for the doctors to call the shots we can get to the bottom of this. His pain is still high. Again we are being pushed toward palliative care and our refusal seems to trigger less pain management. We have refused phentanyl and morphine and that is all they want to offer despite the effectiveness of simple saline and anti inflammatorys. Our hope is the pediatric wing will be more inclined to save his life rather than push for end of life services. He is a fighter and as long as he is willing to fight I am willing to be the mama bear defending her cub. As he says “ God hasn’t allowed this much pain without a good reason mom, they don’t get to decide when I am done only God does” Prayers are appreciated.

Update on my boy We are being sent to the next hospital. We started with a transplant hospital because of our concerns with his liver. Because we are going in through ER once a concern is addressed insurance won’t approve anything else. He is so complicated that they are literally just guessing and running test. Here is what we know ( don’t want to risk doxxing ourselves so I am editing but will be happy to elaborate in dm) The blood cancer is not the issue and his liver is not the issue. Back to pediatrics and the hope is that because pediatrics has more freedom for the doctors to call the shots we can get to the bottom of this. His pain is still high. Again we are being pushed toward palliative care and our refusal seems to trigger less pain management. We have refused phentanyl and morphine and that is all they want to offer despite the effectiveness of simple saline and anti inflammatorys. Our hope is the pediatric wing will be more inclined to save his life rather than push for end of life services. He is a fighter and as long as he is willing to fight I am willing to be the mama bear defending her cub. As he says “ God hasn’t allowed this much pain without a good reason mom, they don’t get to decide when I am done only God does”