We are so tired. Tired is probably not even a good enough word for the state we are in. Watching our child suffering is unbearable. Gavin spent most of the night with O2 levels in the low 60's to low 50's -- yet he is still trying to keep going. His lungs are almost completely filed with fluid and his is swollen and grey. We are having so much difficulty keeping him comfortable. He is on lethal doses of narcotics and we also started with sedation medications -- but he is still building tolerance as the hours go by. His CO2 levels are probably so high at this point that he really isn't cognitively intact anymore but it is very difficult to hear him cry out.
I sat with him for a few hours last night and rested by hand of his chest just praying that each breath would be his last -- that he would realize that he didn't need to fight anymore. He could stop suffering.
Today we are stopping all fluids is hopes it will help this process. We are also seeing if we can begin Propofol to help him stay sedated and peaceful.
We can feel your prayers. Through all of this Adam and I have a sense of peace -- knowing that the end will be a moment of joy and freedom for his tired body.