We came home this afternoon. K had a rough night last night and would not let me stray from her more than an inch (seriously). She still won't let me too far from her and she is still sick to her tummy. We used her g-tube to pull out a lot of clotted blood from her tummy and it has seemed to help a little. She spiked a fever in the middle of the night. They let us still take her home but are concerned about the fever because of her immunosuppression. We are to call if the fevers come back. WELL, the fevers are back. We have called cardiology and are waiting to see what happens with them. She is refusing to drink anything (so glad we have a G-tube). I am thinking that tonight may be a little rough, but that is fine with us. I am tired but so glad that we can do all this in our own house. After all, this is such a normal kid thing to have done and a walk in the park compared to all the other stuff. So for now, we will go on loving being 'normal'.
Dear Parent Who Just Lost A Child
8 minutes ago