After working for an hour and a half, they were not successful at placing an aterial line. They did get the central venous line though.
The attending came around and I jumped. We talked about Bella. We talked about long term. This is not a life. Taking six hours to recover from a bath is too long. Desating to have a bowel movement is not good. I talked a lot. He listened. Bless him. Then we talked. We talked long term. He has no crystal ball, but we looked at her “life” and what we can expect. We talked about the impact of Bella living in the hospital on our family. We talked trachs and g-tubes.
A team will be called together to discuss Bella and what would be the best for her. Living from crisis to crisis is not how I want to live. Finding ways, even drastic ways, so that Bella can go home and LIVE A LIFE is what I am seeking. I want Bella to live as full of a life as possible. I don’t see that happening living at Texas Children’s Hospital. The doctor was astonished at two things. One that I knew so much about these procedures. I have many Moms with kids with DS that are sharing their knowledge and experience with me. (THANK YOU!) And two that I was being so proactive. I think a long hospital stay and love does that. We love you Bella. Hang in there sweet girl.