The Unknown

Maddie and our family are at the pediatric hospice house. She was more lethargic and floppier than usual yesterday. Her extremities and face were pallor in color so the Nurse asked us to bring her in for observation. By the time we got to the pediatric hospice house, Maddie had 4 intense seizures that I started thinking maybe this is it. She ended up having 7 seizures total and was given diazepam which seemed to help. Today she was put on a nasal cannula to provide her with some oxygen and her coloring seems better but not quite where it should be. Her right foot is slightly swollen and she has been spiking a fever off and on since Wednesday. She has been given Motrin, Tylenol and Morphine for fever and pain. Dr S and the staff are not sure if she's declining more rapidly than anticipated or if it's something else. Maddie will be here for a few more days to try to give us an answer of what is happening. Chris asked Dr S about the Pentobarbital Coma. She said that it will sometime work then the individual will go back to the same seizures as before the coma. She thinks that Maddie may still be having subclinical seizures because of all the sleepiness which is what we have been suspecting. The unknown is so hard for us. I am concerned with any little changes that I see. We are so not ready for our sweet girl to leave us soon but our hearts breaks to see her in so much pain and in such discomfort these last few moments. We know that God alone knows when the time will come. The Hospice House is wonderful with warm and caring staff and a loving environment for the entire family. As Maddie is resting the other two girls are able to still be little girls as they explore the house and play with all the toys. We are so thankful for this place and the loving staff. We are very blessed to have those friends and family that are praying for us, calling, messaging, texting or visiting us. We truly are so grateful and really need all the love and support right now. Your support and compassionate natures are such wonderful encouragements to the five of us and knowing that you care and love Maddie and our family means the world to us and will help us through the difficulties of life. Please continue to keep us in your hearts & prayers!