There was a time when the doctors sought to protect us from harsh reality. That is no longer the case. This morning the doctor told us that the Glenn may actually make Hope worse. As for the Fontan, he said she may not make it there. I'm learning to face the reality that there is a high probability that we will have to say goodbye to Hope. I simply will not give up on her until we are truly there, I have no other option if I want to be a good mom to Hope.
This afternoon Hope will be taken for another PICC attempt. It would save her from all the IV pokes and allow her to receive her liquid nutrients through it to avoid burns. We fear that it will be unsuccessful and she'll be put under for no reason. If it is successful, it will allow Hope's care to move forward. I don't believe they even have a plan B for her at this point. They will be looking to get a PICC in one of her legs as her arms are no longer an option.
Hope was supposed to have a procedure done this morning to see what her intestines are doing with food that is put through her tube. Unfortunately, they forgot to put in the order to stop one of her meds that needed to be discontinued before the test. As a result, the procedure was cancelled and will hopefully be rebooked for tomorrow. We hope they find something to explain her feeding issues, but pray it's something that we're able to treat.
Hope's Glenn is still booked for November 7th as it's the next step for her, although risky. If they find something they are able to treat with her stomach, this date could be altered as a result. Nothing is a sure thing with Hope and we take each day as it comes. I simply pray that today is more hopeful than yesterday. Yesterday was a terrible day that involved me truly fighting the staff to keep trying with Hope. I was emotionally exhausted by the end and frustrated that this responsibility was on me alone. I wish Shawn was with me all of the time, but understand that he isn't able to be. Hope is our daughter and making decisions about her life should be something we do together. Shawn has been supportive of my decisions and trusts in my ability to fight for Hope. We are a team at heart, but are not always able to fight for Hope together.
Please continue to pray for us. We know that God is able and truly pray that He intervenes in Hope's life and sustains it. We don't know why Hope has to walk this terrible road, or why we were chosen to walk it with her. We trust that God's plans are greater than our own, but struggle to see how we'll move forward if His plan is not to save Hope.