I don't know if it is harder for us to be away from family, or for family to be away from us. I apologize for not answering the phone calls, I know everyone cares so much. I know there are so many of you willing to jump on a plane to come out here. I am thankful every minute to have Brad here, and to have so much uninterrupted time with Logan. Logan's doctor, Dr. Rome, is a VERY tall, quiet man (he reminds me of my Uncle Mark) he comes in several times a day to check on Logan. I can tell every time he sees me he wants to offer some sort of comfort, but isn't sure how. This morning he just hugged me. It is comforting to know he genuinely cares.
Logan is having a rough time. I have been holding him for the last 24 hours. He is most comfortable in my arms. If I leave to go to the bathroom he cries until I pick him up again. A nurse tried to hold him last night so I could get some sleep, but he cried (more like moaned) the whole time. So I sit in the rocking chair with him as long as I can, and even then he is still miserable.
He ate on Monday after surgery, but then went on a hunger strike again for the next 36 hours. I think saying he has been miserable is an understatement. They tried to bring down his sedation a little yesterday to see if that would help him eat, but that made things worse. Pain meds don't seem to do much. He refused to swallow anything for those 36 hours (wouldn't even suck on his binky)- we have been pretty scared. They did an ultra sound on his brain today, an echo of his heart, and an x-ray and have no idea why he is having such a hard time.
About an hour ago we finally got him to eat a little bit. This is the first time he is resting somewhat peacefully in his crib.
My mind has a lot of time to think. I am so up and down in my emotions. Why in the world are we so far away from home? I keep trying to figure that out. I might never know, but I hope we get to bring our son home soon.
We have a new reality to come to grips with. A single ventricle heart is a miracle, but it does not come without challenges. I know there are a lot of babies thriving on a single ventricle- please keep giving me hope that they can and will live a normal life. And that MY Logan will return to me soon. Not this baby covered in medical wires, IV's, chest tubes, that hits away anybodies hand that comes near him, and who hasn't smiled in days. I see older kids here in the hospital, and the thing that got me through the first 2 weeks was thinking we were here to save Logan from having that life. Now who knows. It is a hard time to be positive. It is also hard not to feel like we are taking steps backwards. Before surgery Logan was so happy and healthy. His oxygen saturations were always in the 90's, and there were no physical signs of his heart condition. So to see him so "broken" is unbearable. His saturations are in the low 70's and he doesn't even look like himself. I wish there was some way to take it all away.
But he ate, and he is sleeping. So for now that is progress.