Just had a very vivid memory come flooding to back to me - will add to Ethans web site later too. It was the feeling of standing in his room at GOSH April 2010, watching the numbers go down, or being called at silly hour and sitting outside to be told he was hard to ventilate - they had tried three new tubes and they had no way of helping. Or seeing him open his eyes for the first time in weeks and I was so happy I went to call OH who was in the room. When I got back the emergency button had been pressed again, and OH arrived to witness another leg shaking, white faced - shocked me. The ups and downs so many until I felt Ethan could surely not take any more needles in him, every time he was touched he "dropped". Which meant he wasnt fed for 10 days as they couldnt touch him to get tube down. The sick to the stomach, so very tired but cant sleep - leg trembling feeling. The feeling of "he cant any more - hell I cant take any more." The pain in my heart when hearing OH say "take me instead - my life for his".
and my little boy came through it all - through all the pain, and I will not change him for the world.
and my little boy came through it all - through all the pain, and I will not change him for the world.