The Hardest Day

This is Friday, January 22nd. This is going to be the hardest day. I don't know how I will get through it. My heart is breaking. I have been talking to Ken this morning. I want him to wake up and tell me what to do. I want him to wake up and apologize for putting me through this. I want him to make it stop. I want him back. I want to tell him I love him and hear him say he loves me.
Today is the "Family Meeting" with all the people involved. There are more and more people that have been telling me they are going to be there. First there will be me, my son, Jeff and his wife, Sara, my parents, my sister-in-law, Toby, our 4 girls and my son-in-law will be on the phone. Then there will be Dr. Matous, the oncology Dr. we started the bone marrow transplant with; Dr. Clark, the pulmonary intensivist Dr, (or Dr. Fayngersh if Dr. Clark isn't available); the infectious disease Dr.; Monica, a case management nurse that follows the oncology team on rounds; Ken's day nurse; the hospital clergy; a psychologist; the social worker; seems like I am forgetting someone. It will be a full room of experts. Really? I don't want to hear what I know they are going to tell me.
It is 3:30 am. I am watching the nurses give Ken a bath now. They are taking such good care of him. They have shut off his feeding tube for the night. It usually runs 24/7, but he has to fast this morning for his liver ultrasound they are performing this morning. The docs have ordered a bunch of tests for this morning. A liver ultrasound to see if his liver shows signs of illness after all the antibiotics, the sedation meds and the steroids. They ordered blood gases and a new x-ray of his chest. Please God, let them find a miracle in his lungs. Let them find healing. Let them find low CO2 levels and high oxygen levels. I wish his lungs would just start moving. They are going to tell me that they are stuck. That there is no compliance, no flexibility. That there is permanent scarring that can't be healed. They are going to say his oxygen volume he accepts is too low and his pressures are too high. This means that when they put a small volume of air in Ken's lungs with the respirator, his pressures are too high. This means the air is causing pressure instead of his lungs expanding and accepting that volume of air. I hope they are going to say that they think Ken still needs more time and that he still has a chance. I want this day to be a great day.
My mind has been all over the place in the last 2 days. I've been thinking about Ken making his peace with God. I remember him telling me just before we started the transplant, that he did just that. I know God is with us, but I don't want Ken to be ready. I want him to stay here. I've been thinking about Ken's wishes. He has always wanted to be an organ donor. We went together to a church about 20 years ago to get tested and be on the bone marrow national registry. I even got called once about 5 years ago to go in for initial testing to be a donor. It turned out that I wasn't really a match, but Ken was excited for me. Ken has always had organ donor on his drivers license. It will make him sad to know that because of his cancer and all the steroids he has been on, he will not be able to be a donor now. I've been thinking about all the times that Ken and I laid awake all night and talked about the kids, our jobs, about our life together, about our future. I want him to talk to me now. He wants to go to Disney World. How can I ever go without him? He couldn't wait till Norah gets old enough to take her there. Ken and I always said we were going to go to Florida and work at Disney World for a bit after retirement. We thought it would be such a fun place to work. He loved that some of his students were able to go there for internships. I hope heaven has a Disney World for Ken. Maybe Walt has been there long enough to create a fantastic Disney twist for God's world. Ken would love that.
How am I going to get through this day? How am I going to manage? I am so thankful that part of my family will be with me. I worry about our girls that will be on the phone by themselves. I know Steph is going to be taking lunch in her car. I hate that she will be alone for this call. And Anna is so far away in New York. Tessa is going to get snowed in at Steamboat with all the snow that is predicted this weekend. I know Katy has Mark to help her through. Mark is so strong and he takes such good care of her. I wish they could all be here. I want to wrap my arms around all of them. I've been living this with Ken every day. I have talked to the doctors and have asked my questions every day. It is so hard for the kids to be so far away. They have been a great source of strength for me. But Ken is my rock. I need him so much. I miss him already. He hasn't talked to me since Dec. 20th. But at least I have been able to hold his hand and talk to him. He has started to grow his beard again. We have shaved him a few times. His hair on his head hasn't started to come in yet, but they say the beard comes first.
I wish this wasn't happening. Dr. McSweeney, another oncology doctor told me yesterday that they think Ken having the swine flu and having pneumonia at that time, played a really big part in Ken being where he is now. They actually have another BMT patient that had the swine flu that is having lung injury as well. I don't think it is as bad as Ken. I hope not. I hope they don't do a bone marrow transplant on any other patients soon after the swine flu. Wish they had known this before Ken started. We could have delayed his BMT. Hindsight. We can't go back. Ken would say it is what it is. But I say that what it is, stinks. It isn't fair. It isn't suppose to be like this. I want it to get fixed. I want them to find a way to help Ken. I want him back. I love him.