Cried out and confused...

We went to house last night to clean and stay busy while Avery was in lab. They called and said they had found no blockage, just a narrowing. If I understand correctly, the heart surgery repair opened the flow too much and alot of blood is mixing and going to lungs. We showered and took separate cars back to hospital to have alone time. I drove around first and cried, yelled, and screamed!! I am so tired, mad and distraught. Carissa has been crying and depressed going on three days. We are tired of the wires. Tired of the experiments. Exhausted from watching Avery suffer. My role as a husband and father is to shelter my family. We just want to hold her and take off the tape and bathe her. Carissa arrived at the hospital first and was talking to Dr. Garcia. I joined them. The Dr. said they would discuss maybe going back in through her chest and putting some sort of restrictive piece on her aortic valve to slow the blood but it might make it mix more and she could die from infections, bleeding and everything else. Not an option we willing to try!! We cried by her bedside and held her hands. I wanted to feel her grasp and watch her eyes move under her eye lids so we asked them to take off paralytic. I played some songs for her through my headphones and we sat with her until a good friend of who is a respiratory therapist stopped by to check on me. We left around midnight after Carissa talked me into sleeping at the house and not the hospital. It stormed all night and I don't think we slept much. We came back this morning and talked to Dr. Budda. I honestly stand there sometimes and hear the explanations, but it is so surreal like an out of body experience. I cannot believe we have to endure this everyday! He explained the same things about the narrowing and the blood flow and that they are still not sure why she is swollen. Dr. Jaquis is trying to ween her completely off of the nitric oxide to see if that helps the blood...we don't know what the hell is going on at this point. Carissa and I don't want to give up, but we are really close to telling them to stop all of this nonsense and just leave her alone. To me, Avery is basically on a different kind of ecmo...treading water to stay alive. We are in a daze and need guidance from God at this point. Please let this all end soon.-Shane