It has been a very quiet day. Gavin is acting more like himself and his labs are looking better everyday. His bilirubin has come down so he is no longer looking yellow, though his liver and spleen are still very large, which is causing him some pain.
We were able to draw blood back on the one lumen of his central line that was giving us problems yesterday so that made things go nice and smooth today and once again we are still getting negative cultures. We really will not know for sure if the fungus is cleared until the seven day course of Ampho locks is complete.
Someone, not knowing my fragile state today, ordered Gavin to get OT and PT on a daily basis. This did not go over well with me as I just want some space. I know Gavin needs help with his development, but the poor little guy looks like he just consumed 15 pizzas and a case of soda -- If I were him, a workout would not be my idea of a good time. I asked them to leave -- nicely of course.
Today was a very rough day for me -- mentally more that physically. Sometimes our reality flashes before my eyes and is pretty much slaps me in the face and reminded me that this is not the life I ever imagined for my child, my family or myself. With that said today as we walked past the intensive care unit I was humbly reminded that things could be worse. There has to be a way to enjoy life even if it mean being confined within these walls -- I just need to find it.
Thanks for keeping Gavin in your prayers!