November 3rd: 49th day

Yesterday, when Dave and I went to visit Ben, we both thought that he looked so much different..older. While we were with him, even though his oxygen sats were good, he was shunting, and more than he usually does..(his oxygenation was not as good to the lower extremities). It was still acceptable, but not really his norm. Today, when I got to the hospital, his heart rate was elevated and his sats were separated again. Mindy said on rounds the doctors had decided to give him an extra dose of his lasix to help pull off some of the extra fluid after the results of his daily chest x-ray....I realized today this extra fluid was probably why he looked a bit older, his face had been fuller, not swollen, but just fuller. He had therapy today and with this they attempted to put his head a bit more to the mid-line, but he really doesn't like this. Afterwards he just had a furrowed brow, not super uncomfortable, or looking like he was in a great deal of pain, but I knew something was making him feel bad. Well, Mindy moved his head back to the side and had also given him his lasix dose...I left for a few minutes and when I came back, everything was looking much better. Ben just looked more comfortable, and his sats both came up into the 90-100 range...which is much better. Even though his sats were better after he urinated quite a bit, he was still much more 'touchy' today than he had been in the past few days. Even with this they are still making progress on weaning his vent support and pain meds. He also had another cardiac echo today, of which we are still awaiting the results. This is basically how his day went today, we are hoping for a quiet night for him. This picture was from today after we got him more comfy....