Today has already been a hard day. Claire is completely off the sedatives and she is miserable. She is posturing a lot more than she has before and it’s troubling us both.
Claire has a big 48 hours ahead of her as the doctors try to prep her for transfer to Baylor Children’s Home for rehab.
First Claire will have her arterial line moved from her femoral artery to under her arm. We’re doing this to avoid infection and also to get some of the cords off her legs.
Claire is also scheduled to get her g-button in tomorrow which will free her from the nose tubes. The surgery will take about an hour.
Because of how busy it will be for the next two days we ask that visitor flow be kept at a lower level. We will be in and out of the PICU while Claire goes through various procedures.
We will be meeting with a neurologist today also. I will post some more details later today once the avalanche of information abates.
Please keep us in your thoughts and prayers today. It’s goig to be a challenging one.